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This is My JournalMonday, November 08, 2010 12:06 AMScan Week Hi Everyone, It's that time again....Scan Week and all the "scanxiety" that goes along with it. Brooke will have her MIBG injection, labs drawn, and her CT scan on Tues morning and then Wed morning she will have her MIBG scan followed by oncology clinic and ophthalmology. Please pray for clear scans for Brooke! I should know results by Wed afternoon and will try to post by Thurs evening. Also, the boy Wayne, from Brooke’s school that also has NB is having a really tough time and could really use all the prayers he can get (and also for his family). Brooke and I were just in NJ for the weekend for the Little Smiles Stars Ball – “A Night at the Oscars” at The Please Touch Museum in Philadelphia on Saturday night. 5 kids from CHOP oncology were invited as well as several kids from other local hospitals. The night started with us (Brooke, me, Grammy & Uncle Johnny) heading to CHOP for Brooke to get her hair and makeup done. Then the limo picked us up to take us to the Ball. Once there, the kids each got introduced separately and then got to walk the red carpet while signing autographs! Let me tell you, Brooke was working the crowd! It was too cute and she felt like a real star! Next, all the kids were given Oscar awards. Brooke got to dance with the Phillies Phanatic, had a private tour of the museum (which rocks by the way), loaded up on a bag full of candy, got tons of cool gifts, rode the indoor carousel, hung out with some of the fabulous nurses from CHOP and Miss Sarah(Child Life) too! A few weeks prior they asked the “Stars” to draw a picture of what they thought the night would be like and then they framed them and auctioned them off – Brooke’s went for $350! All in all it was one of the best nights of Brooke’s life (and mine too) and it will be a night we will never forget. Thanks to everyone at Little Smiles and CHOP for inviting Brooke and making it such a special night! For more information about Little Smiles and what they do see www.littlesmiles.org. While we were in NJ, Rob was at Aunt Jenn and Uncle George’s in Fairfax, VA for a golf tournament that raised money for The Brooke Mulford Foundation and St. Jude’s Hospital. Haven’t gotten to hear any of the details yet but maybe Daddy will be able to update everyone on that soon! Thank you to everyone that was involved with the Brooke Golf Tournament! Some other fun stuff we have gotten to do the past couple months: Sept 26th we spent the morning in Philly with Team Brooke for the Parkway Run that benefits the Cancer Center at CHOP – Thank you to everyone that came out to run or walk and helped to raise hundreds of thousands of dollars for pediatric cancer research! After the race The Oaklyn Manor Bar in NJ donated a percentage of the profits from the afternoon sales to The Brooke Mulford Foundation. We had a great time and great food! Thanks to Marcie, the Manor and everyone that came out! Not long after we left the Manor we were heading up to Long Branch NJ for the Rockin’ the Boardwalk event for Make Some Noise: Cure Kids Cancer. Brooke was one of the honored kids at the event and we had a blast! October brought many fun filled days including: Brooke and I spent a fabulous weekend with old friends, Terry, Ashley & little Riley in Williamsburg, VA and at Busch Gardens. Riley and Brooke had a blast together and were so stinkin cute! Ashley (Riley’s mommy) was Brooke’s very first babysitter and is a fantastic mom herself now! Brooke and I also got to have dinner one night with one of my best buds, Erin (Brooke fell in love with her and hubby Kevin) who moved to Williamsburg a few years ago! Miss you guys! Halloween weekend was jam packed with Halloween parties and festivals at the Nazarene Church Fri night, Trinity Sat afternoon and trick or treating in our neighborhood on Sunday! We dressed up like the Peanuts Gang (Snoopy, Charlie Brown, Sally and Bailey as “The Great Pumpkin”! Brooke is crazy about Snoopy which I’m thrilled about since he was always my favorite growing up! Well, it’s getting late and we have a lot to do tomorrow to head back to NJ again. Thank you again for your prayers for Brooke and Wayne this week and for all the little warriors out there. God bless, Amy Saturday, September 11, 2010 09:30 PM Starting Kindergarten! Well, Tuesday my little girl reached milestone day we feared might never come. She started kindergarten! She fared much better that day than Mommy and Daddy but isn’t that always the way? We celebrated that night with dinner at Market Street with Brooke’s cousin Cassidy who is, much to our delight, a freshman this year at SU. Thursday of this past week she also started taking dance (ballet & tap) with her buddy Jordan and already wants me to sign her up for the next session! September is Pediatric Cancer Awareness Month and each year in Philadelphia there is a 5k walk and 2k Family Fun Walk called the Four Seasons Parkway Run. This event is held to raise much needed funds to support children’s cancer research at The Children’s Hospital of Philadelphia (CHOP) where Brooke has received all of her treatments for Stage IV high risk Neuroblastoma. Each year, more than 8,000 children across the US are diagnosed with cancer. CHOP has the nation’s largest program for pediatric cancer patients. CHOP has also established the nation’s first cancer survivorship program to study the long-term effects of treatment. For the 2nd year, we have entered a team called “Team Brooke” and this year Brooke will be able to join us and will participate in the 2k Family Fun Walk! Here are some of the details: When: Sunday, September 26th, 2010 (rain or shine) Where: Four Seasons Hotel, One Logan Square, 18th St. and Benjamin Franklin Parkway, Philadelphia, PA Time: 7am- Registration opens 8:30am – 5k Run begins followed directly by the 2k Family Fun Walk Following the race will be a lavish post-race buffet right on the Parkway, catered by Four Seasons! If you are interested in joining our team and walking or running with us please click on this link: http://giving.chop.edu/goto/teambrooke2010 and click on “Join Team” Or if you would like to make a donation: click on the link http://giving.chop.edu/goto/teambrooke2010 and then click on the button that says “Donate to Team Brooke” or if you would like to for your donation to help a team member reach their individual fundraising goal than 1. click on that team members name 2. Click on the red button that says “Donate Now” and then follow the instructions from there. Also, to coincide with Pediatric Awareness Month, a media story was done involving our Super Brooke and our dear friends at Wonder Capes. Please check out the video and blog on all 3 sites (all the same story) if you can and comment on each about the lack of funding for pediatric cancer research. 1. http://bit.ly/aIOi50 Go Inspire Go 2. http://www.huffingtonpost.com/toan-lam/wonder-capes-inspire-comf_b_706808.html Huffington Post 3. Deepak Chopra's site, Intent.com http://www.intent.com/toanoo/blog/wonder-capes Here are some facts about pediatric cancer: *Childhood cancer is the leading cause of non-accidental death in children in the U.S. Cancer kills more children than any other disease, more than asthma, cystic fibrosis, congenital anomalies, diabetes, and pediatric AIDS COMBINED! *Every 3 ½ minutes a child is diagnosed with cancer! *Every 4 hours a child loses their life! *Approximately 7 children die each day from cancer! *One of every five children diagnosed with cancer will not survive! With stage IV NB it is more like 3 out of 5 won’t survive! *Cancers in children are highly aggressive. At the time of diagnosis, 80% of children and teens have cancer that has already metastasized or spread, compared to only 20% of adults. Early detection of childhood cancer is extremely difficult. *Research on adult cancers does not generally help cure childhood cancers, as the cancers children get are different types from those that strike adults. *The U.S. Government spends less than 3% of the total cancer research budget on all childhood cancers combined! Our kids deserve better! Thank you and God Bless, Amy Thursday, August 12, 2010 01:13 AM SCANS ARE CLEAR! Just wanted to update quickly with the great news: SCANS ARE CLEAR! Brooke and I had a long day at CHOP today (10 hours) and here were the results: MIBG & CT scans are clear! Audiology: No additional hearing loss since March. Ears look healthy. Follow up in 6 months. Eyes: Amblyopia slightly improved but needs to keep wearing eye patch 4 hours/day. Follow up 3 months. Labs are all good and where they should be for a year post transplant. Minor Thyroid issues are being well controlled with meds. Brooke grew 1" since May putting her on the charts at the 5th percentile for height for her age. She also gained a couple pounds putting her in the 5th percentile for weight! Brooke was thrilled to see Dr. Weiser, Miss Sarah, Kate and all the wonderful staff. Brooke even asked if she could do just one more sleepover at CHOP but I said NO WAY! Thanks for all the prayers! Time to head to bed! God Bless, Amy Tuesday, August 10, 2010 11:23 PM Scan Week I know it’s been a long time since my last update – We’ve been making up for a year and a half of lost time! It’s hard to believe but it’s been 3 months since Brooke’s last set of scans. Brooke and I drove up to NJ Sunday and I got my Pod (favorite sushi restaurant) fix with Johanna that night for dinner. Monday we spent a fun day at Sesame Place with a good friend of mine from high school, Maureen and her wonderful kids, Jordan and Sam. Today (Tues) we had to head to CHOP early for Brooke to start drinking her contrast for her CT scan (this was the first time she’s been able to get it all down and I was so proud of her)! We also went to the oncology clinic to have an IV placed in her hand (for her MIBG injection), labs drawn, and a urine test. We are approaching Brooke’s 1 year anniversary of her 2nd transplant (Aug 21st) so we also went to Transplant Clinic today. Her transplant wiped out all of her immunizations since birth so now she has to have them all over again and today I was given the guidelines/schedule for getting them (not looking forward to that). Once we were done with all her appointments we headed up to our old home away from home on the 3rd floor and said hello to everyone. Tomorrow (Wed) we will head back to CHOP at 7am for an audiology appt, 9:30 MIBG scan, 1:00pm Oncology appt where we will get the results of both the CT scan and the MIBG scan and then a 3:30 Ophthalmology appt. It will be a very long and busy day but hoping I’m too busy for the scanxiety to take hold of me. I’ve done a pretty good job this time around not getting too freaked out about them but that fear has a way of working its way into my heart and mind. Please pray that we are blessed yet again with clear scans and life can go on as normal for another 3 months. It’s getting late but I am going to try to fill you in on some of the fun we’ve been having since the last update. June 23rd, Brooke and I were invited by James Taylor’s assistant, to his concert with Carole King in Washington, DC! We got to go to the soundcheck and meet James and Carole afterwards!!! It was AMAZING! I am not exaggerating when I say that I am a HUGE JT fan and it was really a dream come true. Brooke lost her first tooth right before the soundcheck started and James was so sweet and told her all about the tooth fairy (he is a great storyteller and he had all the adults in an earshot hanging on his every word)! We met some other wonderful people at the soundcheck (Robbie, Staci & Lance). They each really made the night even more special and I hope that they will always be a part of our lives. We were able to sit in the front row for the concert and the drummer, Russell Kunkel, came over and handed Brooke his drum sticks! Once again, it was AMAZING! June 26th, Brooke & I attended the Alex’s Lemonade Stand Childhood Cancer Symposium for parents and caregivers in Philadelphia. It was a great conference and I was fortunate to be able to meet Alex’s mom and dad (Jay and Liz), saw some onco mom and dads from CHOP, and met some other onco parents that I have gotten to know on online NB support sites. They had activities going on all day for the kids and Brooke had a blast. Miss Sarah, her Child Life Specialist from CHOP was even volunteering there that day with the kids! For anyone not familiar with this wonderful organization you can learn more at www.alexslemonade.org July 24th we were asked by The Cool Kids Campaign (an organization very dear to our hearts) to accept the “Good Neighbor” award by State Farm at the Orioles game. It was Rob, me, Brooke and Sharon from Cool Kids. They were going to have us on the field for batting practice but due to the 102 degree temp that day batting practice was canceled so they gave us a behind the scenes tour and dinner in the Orioles club box. We split our time in the air conditioned box and the front row seats behind home plate! Sweat was just dripping off us but we were loving every minute of it! They are actually having us back again in Sept for a Yankee’s & O’s game! www.coolkidscampaign.org We’ve done so many other fun things this summer but I am getting really tired and not the least bit a morning person so I’m going to end for now. I will try to update tomorrow night with the results of her scans. Thank you again for your prayers and support! God Bless, Amy Wednesday, June 16, 2010 05:23 PM Long Overdue Update Hello Everyone! So sorry for not updating for so long! Since I last updated with the fabulous news of No Evidence of Disease on May 12th we have been keeping busy. Saturday May 15th we walked 3 miles for Courageous Christopher 5K Run/Walk & Stroller Strut. We had a great time for a great cause! May 22nd we finally got to meet Wayne Bailey (the boy from Brooke’s school who was also diagnosed with NB) and his mom Heather at a fundraiser for Wayne. Brooke has also started playing T-ball at the YMCA with her buddy Greyson and went to her first birthday party in 1 ½ years to celebrated friends Jordan and Jackson’s birthdays on May 23rd. May 24th – May 30th we were so blessed to travel to Orlando, FL for Brooke’s Make A Wish trip. Since Brooke doesn’t have any siblings, Make A Wish even let Grammy and Nana join us! A limo picked us up at our home and took us to the Philly airport. We stayed at the most amazing place called Give Kids The World. GKTW is an entire village for “Wish” kids. We stayed in a 2BR villa and Brooke was spoiled daily with gifts, carousel rides, ice cream, character visits from all the theme parks, horseback riding and so much more. They provided us with tickets to Disney, Universal & Seaworld (as well as many other local attractions but we only had 5 full days to play) and we were able to get moved to the front of the line for all the rides and for meeting the characters (PRICELESS)!!!! Our good friend Merritt joined us 2 of the days we went to Disney parks and another night for dinner at Downtown Disney. Merritt’s brother Joe met us out 2 nights for dinner as well. One of the many highlights was Brooke getting to participate in the Lion King show at Disney’s Animal Kingdom (thanks to Merritt’s friend from church who is one of the stars) and then having a meet and greet with the cast afterwards! Another highlight was getting to feed the dolphins at SeaWorld. One of the dolphin trainers stayed with Brooke and had some of the dolphins do tricks for her! Brooke was also so excited to give Curious George a huge hug at Universal Studios and also back at GKTW! The week went by way to quickly and we would have loved another few days to be able to enjoy more of the activities at the GKTW village. We spent every day (all day) at the parks! We had to leave early on Sunday morning for the airport and once again had a limo ride back home from the Philly airport. We cannot thank Make A Wish and Give Kids The World enough for making Brooke’s dreams come true! It was truly a magical week! For more info on either organization: www.midatlantic.wish.org www.gktw.org June 6th we headed to CHOP for Beyond Cancer (a fun day of rides, games, crafts & food for former and current oncology kids) something other than a doctor appt for a change! We got to see old friends Malcolm & Catherine and new friend Noah as well as some of the staff (and best of all Miss Sarah)! Malcolm spoke at the start of the event about the foundation he started called Make Some Noise: Cure Kids Cancer www.makenoise4kids.org which has raised over $180,000 for pediatric cancer research and awareness since January! I asked Brooke on the way home if she had a good time and she said, “yes it was a lot of fun. Do you think they will ask me to say a few words next year?” Shocked I asked her if she would want to and she replied, “Yes. I would like to talk to everyone about my cancer.” Seriously she is 5 years old!!! Aunt Johanna surprised me and Brooke with tickets to the James Taylor/Carole King concert in Philly on June 10th. So we headed back up to NJ for Brooke’s first concert (other than seeing Hi-5 at Sesame Place 3 summers ago)! We partied at Uncle Johnny and Aunt Johanna’s house with Uncle Bruce and Aunt Cheryl (who were also going to the concert) before heading to the show. Brooke did great for the first half but fell asleep during the first song after intermission and was out cold the rest of the show. My girl can sleep through anything since spending the past 1 ½ years in a hospital! Thanks Johanna for such a great night! June 12th, Brooke and Bailey were asked to lead the “Bark for Life” dog walk to benefit the American Cancer Society! Brooke even got up in front of everyone and spoke about her relationship with Bailey and how she helped her through her battle with cancer! Kellie had come with us to help me pull Brooke in the wagon while I walked Bailey and we were both just shocked at how well she did! Well, I think I’ve about covered it all! Oh, wait, Brooke wants me to make sure I tell everyone she has her first loose tooth! Thanks for your prayers for Brooke and our family and please pray for all the other little warriors still fighting the beast! God Bless, Amy Wednesday, May 12, 2010 11:16 PM Scans are CLEAR!!! Getting ready to head to bed but wanted to let everyone know the great news! Brooke’s MIBG scan and CT scan are both clear! We don’t have the final results on the bone marrow biopsy but the preliminary results look good. We will not need to go back to CHOP for 3 months now! Her Audiology appt yesterday went well and there wasn’t any additional hearing loss since her last hearing test so no adjustments needed to be made with her hearing aids. She had an appt today with her ophthalmologist and the issues that she has been having with her eyes since taking the antibodies is starting to improve and he seemed pleased with how they were doing. We were so happy to see a lot of our friends (staff and families) the past couple of days on the floor and in the clinic. Brooke also got to be videotaped today getting examined by Dr. Maris for a documentary for Alex’s Lemonade Stand. Alex, if you are not already aware, was a little girl who was diagnosed with Neuroblastoma at age 4 and treated at CHOP. She started a lemonade stand to raise money for pediatric cancer research in 2000 and her story spread across the country and soon lemonade stands were popping up everywhere for Alex’s cause. Sadly, Alex passed away just 4 years later at 8 yrs old, but her dream of raising 1 million dollars was reached shortly before she lost her battle with NB. Alex’s Lemonade Stand has now raised over 30 million dollars for pediatric cancer research and education! If you would like to learn more about Alex you can visit www.alexslemonade.org . We finally got back to Grammy’s from CHOP tonight around 6:00 and Grammy surprised us with decorating the house with balloons and congratulation banners and we partied with Aunt Alisyn, Uncle Bruce, Aunt Cheryl, cousin Brian and of course Grammy and Pop Pop Dave to celebrate! What an amazing day we have had and we feel so incredibly blessed. Thank you so much everyone for all of your prayers this week and the past year and half and for continuing to take this journey with us. God Bless, Amy Tuesday, May 11, 2010 12:13 AM Bone Marrow Biopsy I just wanted to let everyone know that Brooke made out fine with her bone marrow biopsy today. She was scheduled for 8:30 this morning but they didn’t start the procedure until this afternoon so it was a longer day than I expected. Brooke was very anxious about having the iv put in her hand but she did great when they actually put in in and didn’t even flinch. She has never liked having an iv in her hand since the beginning and never wants anyone to see it and keeps it covered with her blankie at all times. When she woke up from the procedure she was fairly pleasant until she saw that the iv was still in her hand and she had a fit until they could take it out! We won’t know the results from the biopsy for at least a few days and I promise to update as soon as I can. We were so happy to get to see some of our NB friends today that were in the onco day hospital waiting to get admitted (Please pray for Charlie, Beth & Robyn as they go through their treatments this week). Thanks everyone so much for all the prayers – my scanxiety has not been nearly as bad as I thought it would be! God Bless, Amy Sunday, May 09, 2010 11:00 PM Mother's Day I’m exhausted and have to be up early Monday morning so I’m going to keep this very brief and will update more soon. I had a wonderful Mother’s Day today (best one ever)! After church and brunch I packed and at 4:00 today Brooke, Bailey and I headed up to NJ to my Mom’s house. Brooke is having all of her End of Study scans and tests this week at CHOP. Monday morning she is having a Bone Marrow Biopsy. Tuesday she will have a CT Scan, MIBG injection and an Audiology appt. Wed she will have a MIBG Scan, Oncology clinic appt and Ophthalmology clinic. Since Brooke no longer has her “tubies” she will need to have IV’s placed and needle sticks so I imagine this will be very stressful for her which will be stressful for me as well along with the stress of the scans themselves and what the results could be. Please pray for clear scans/biopsies as well as comfort and peace. I will update whenever I get results or if there are any issues. Thank you so much! God Bless, Amy Friday, April 30, 2010 12:09 AM Finally Home! Hi Everyone, Sorry it has been so long since the last update. It’s so much harder to do when we are at home! The past week has been a tough one for me. One of our NB friends, Jolee, from CHOP relapsed just after Easter and the cancer spread quickly and she passed away last Thursday. Jolee was originally diagnosed last summer while Brooke was in for her transplant and I quickly fell in love with the whole family. She had been doing so well. She had just flown through her first stem cell transplant, celebrated her 2nd birthday and was due to start her 2nd transplant the day after Easter when they found out that the NB was back. My heart is breaking for Jolee’s family…please pray for them. It’s been a brutal reminder of how nasty this cancer is and how much we still need everyone’s prayers for Brooke to remain NED (No Evidence of Disease). We go back to CHOP for end of study Bone Marrow Biopsy, CT Scan, MIBG Scan, Ophthalmology, Audiology, and Oncology clinic May 10-12. Every little thing that Brooke complains about I panic…Could it be the NB is back? She mentioned once today that her leg hurt a little last night when she was sleeping…Is it back? Part of me can’t wait for the scans for peace of mind but part of me is scared to death for the alternative… On happy notes, Brooke has been doing great at home and at school. The staff, students and parents at Salisbury Christian School have been wonderful and have made the transition back to school such a positive experience for Brooke. Some of the highlights from the past 4 weeks: 4/10- Brooke was supposed to go to her friend Alex’s birthday party (she hasn’t been able to go to a birthday party for almost a year and a half so she was so excited) but she got a fever that morning and couldn’t even get out of bed. She had 2 low grade fevers and they told us if she had another we would have to bring her to the ER but by early afternoon the fever broke and she hopped out of bed ready to play but had missed the party. 4/11- I had a blast participating in “An Amazing Race” The Great Clue Caper with my girlfriends (Chris, Kellie, Laurie & Margie) to benefit Village of Hope. We were way out in front in first place until clue #9 (out of 10) totally stumped us and we wound up finishing 10th out of 55 teams but we had such a great time and hope to do it again next year. 4/14- Oncology Clinic at CHOP. Everything went well and Brooke enjoyed visiting everyone but her hemoglobin was a little low so her doctor wanted us to have a lab work done locally in 2 weeks to make sure it didn’t drop any further. We went today to have the blood work drawn and will know the results tomorrow (Fri) at some point. 4/16- Some amazing men came over to put together Brooke’s new swing set! Thank you Jeff Anderson, Joel Beiler, Jerry Sipes, Ed Wilgus & Kevin Hayes! You have made Brooke one happy little girl! I don’t think a day has gone by that she hasn’t played on it. 4/17-Brooke was the Elk’s Team Queen for the Fruitland Little League Opening Day Parade and Ceremony! She rode in the back of a convertible in the parade with a tiara and flowers and mastered the princess wave! When they announced her during the Ceremony the crowd really cheered her on and it brought such tears of joy to my eyes. 4/18- Brooke’s first day back to church. Rev Patterson brought her up to the Alter and told everyone how great she was doing and when we walked back to our seats she got a standing ovation (more tears of joy…don’t you just love happy tears?). That night we went to The Crab Cake Factory, USA in Ocean City where they were having their 14th Anniversary and so generously decided to have Brooke be a part of that by raffling off 2 round trip airline tickets and raised $2500 for the Brooke Mulford Foundation! Thank you so much John, Krista, Mr. & Mrs. Brooks, and Lollipop the Clown! 4/28- Brooke took her last dose of Accutane which I guess means that she is now officially done with her treatment! Woo Hoo! Well, I guess that is it for now. We have a lot going on in May so I’ll be posting when I can to fill everyone in. Thank you so much for the prayers! God Bless, Amy Monday, April 05, 2010 02:32 AM Easter Egg Hunts Hello everybody, it’s me Brookie! It has been such a very long time since I got on the computer to say hi to you all. Today I just felt like I had to tell everyone how wonderful I am doing. I have been playing really hard and been doing my share of Easter Egg hunts. I am quite the Easter Egg finder. I just knew this would be the best Easter ever and it was. I feel so much better than last year. Earlier in the week I was outside playing and I fell down and scraped my knee, it was my first injury in a very long time due to playing. It hurt so much worse than all those treatments and procedures I’ve been getting for so long. (not really, but you would of thought so) It was a very happy boo boo! I have also been enjoying taking a bath, it is just so wonderful to lay in the water and play with all my toys, now that I have my tubies out! Mommy just can’t get me out of the water. I have also been eating like no bodies business, and I enjoy everything especially the guacamole chicken Mommy makes for me. I enjoy getting up early in the morning to go downstairs and wake up Daddy after he has had only a couple hours of sleep; well not every morning if I manage to con Mommy into something so I can stay up later, he he he! The big news is I am really looking forward this week to going back to school and see all my friends, it has been such a very very very long time! I am so excited, but I think Mommy is going to have a very hard time. Ahh, don’t cry Mommy because I am going to miss you so very very much. It’s been you and me for the last year and a half every single day and I think this will be harder than I can imagine. Today was so special, because I spent Easter with Mommy, Daddy, Dr. Dave and Miss Liz at Market Street. It was one of the funest times I had last year before I had to be sheltered from the public for precautionary reasons after my transplants. I wore everyone out looking for eggs last year and you know what? I did it again this year! That Easter bunny sure put a lot of eggs everywhere! (Thanks Megan you did a great job with the eggs) Then I was hungry, and I ate all the scallops from the scallop special Mr. Joel made along with some bread, squash and specially prepared cauliflower. Then I spoke right up and told the waiter I would have the strawberry shortcake, but wait then I had some of Miss Liz’s Coconut Smith Island cake as well. Boy was I full! I then ran around for awhile before leaving to go home and go sound asleep, after watching my new Snoopy video with Mommy that was in that special Easter basket. Well I need to go and rest up for my very big week. Thank you to everyone who has been with me thru this……..Brookie Everyone in shock? I am really sorry it has been a very long time since I have posted anything or gave a Brookie update. Today was that day where I just had to say what a blessing and a miracle that our family has been a part of and been thru. Things have been very stressful and difficult due to the economy as they have been for everybody and work is 7 days a week and very long hours just to survive. Even on a Sunday you can tell by the time I am just getting the time to write this. The thing that keeps me going is that I am healthy, I can’t complain when I look at Brooke and all that matters is her. Also keeping in mind all the other children who suffer from things children should not have to suffer from and all the disasters that have happened around the world as of late. To watch Brooke getting to act like a little girl again and getting to go back to school is just an emotion that can not be put into words. I just had to share with everyone the heartfelt joy of happiness as you all have been there with us in the worst of times and everyone deserves to be a part of the joyous times. So, on this Easter Sunday from our family to yours, thank you all so much for all that you have done and keeping us in your thoughts and prayers and lifting Brooke up in prayer when she needed it most. Those prayers from Salisbury to around the world have been heard and while there is still procedures to be done and the BEAST is ever present for now compared to this time last year there is tears of joy to be had by all! God bless you all! Rob PS. Please all keep Wayne Bailey a classmate of Brooke's in your prayers as you have Brooke as he goes down this long journey of battling Neuroblastoma. Monday, March 22, 2010 11:50 PM Special People Well, it’s a good thing that I took Brooke up to CHOP last Thursday. She wound up with a hole in her central line (MedComp) and had to have surgery on Friday to have it removed. The timing was perfect at least. She is pretty much done with treatment other than oral Accutane until April 28th and our surgeon who we just love (Dr. Mattei) at CHOP is usually not there Fridays but he was that day and was able to do her surgery. We were going to try to wait until she did her end of study scans sometime in May but it is so nice having them out. We don’t have to worry about flushing them daily, changing caps weekly, dressing changes and most of all the risk of her getting a line infection and she can take real baths again! Brooke did great right after the surgery and as soon as she felt up to it wanted to make her rounds through the hospital to see everyone and show them that her “tubies” were all gone! Once we left CHOP to head back to my Mom’s house in NJ she started to feel the effects (overall just didn’t feel well and was exhausted) so we stayed another night at my Mom’s just in case there were any issues which thankfully there were not and she woke up Sat morning feeling great. Sunday, Brooke had her last GM-CSF injection (woo hoo)! Thank you Miss Liz so much for what feels like the hundreds of shots that you have given Brooke over the past year and a half (and also Kellie, Tonia, Dr. Jeff and Marcie’s friends in NJ for filling in when Liz was unable to). There is no way I could have given them to her (well I guess I could have if I had to but I’m so glad that I didn’t)! We are heading back up to NJ tomorrow after Brooke’s dentist appt. She is scheduled at CHOP Wed morning with her Audiologist, Wendy and then has Onco clinic in the afternoon with Dr. Weiser. Please also pray for the little boy Wayne at Brooke’s school that was just recently diagnosed with stage IV NB. He was scheduled to start his chemo today at Hopkins. God Bless, Amy I really want to give a shout out to some special people that have chosen to honor Brooke by shaving their heads to raise money for pediatric cancer at various St. Baldrick events throughout the country. Some I know and some we have never met but they are all hero’s to us! If you are interested in visiting their fundraising pages, I have included the links under each name. Sam Hayes, who is the 8 yr old son of Maureen, a good friend of mine from high school, shaved his head March 13 in Lawrenceville, NJ and has raised over $1200! His mom told me that after he got it shaved he said, “I’m going to do this every year until Brooke is all better!” The event itself even honored Brooke and her story/photo was posted throughout the event! http://www.stbaldricks.org/participants/mypage/participantid/375201 RJ Gauld, a friend of mine from high school and his son Matthew participated March 7th in Collingswood, NJ and each raised $210! RJ: http://www.stbaldricks.org/participants/mypage/participantid/366700 Matthew: http://www.stbaldricks.org/participants/mypage/participantid/366704 Jason Pickett: http://www.stbaldricks.org/participants/mypage/participantid/364259 and Jim Mauro: http://www.stbaldricks.org/participants/mypage/participantid/368706 will be shaving their heads in Baltimore, MD on March 27th and Elizabeth W. will be shaving hers on May 14th in Tinley Park, IL http://www.stbaldricks.org/participants/mypage/participantid/387292 Thursday, March 18, 2010 12:47 AM Final Round of Antibodies Well, Brooke did fabulous this final round of antibodies (no fevers, blood pressure issues, just a raspy voice from all the chattering she does when she’s getting antibodies)! We were able to go home Monday night (discharged about 7pm). I have to admit that leaving inpatient for the very last time (hopefully) is not as easy as you might think. I have met so many wonderful families on the onco floor were we have essentially lived the past 15months and I will miss them all. Plus the nurses, Sarah (child life), Stephanie (social worker) and so many others that work on the floor were just so great to us. I also have really had mixed emotions about Brooke’s treatments ending. I know, I know…you must think that I am crazy and I think only another parent going through the same thing can truly understand, but treatment at least gives you the feeling that you are fighting the beast and as long as you are going through treatment (as bad as it can get) you feel as if you are doing everything possible and that the cancer is being destroyed and not coming back. Once the treatment is over you feel like you are opening up the doors to potentially let the beast back in. Part of me is relieved that my baby is done with it and part is scared to death. I know that I need to put my fears to rest, put my faith in God and move on with our lives but at times that is easier said than done. I have read every scripture in the Bible about fears and anxiety this past year (over and over and over again) and have found great peace in His word but every time I hear of another NB child earning their angel wings (and tragically there have been many these past couple of weeks) the fears come flooding back. My heart aches for each and every one of these families… Yes Brooke is NED (No Evidence of Disease) but the scary fact is that there is a very high rate of re-occurrence. Please continue to pray for her especially in this next year as most kids seem to relapse in the first year after becoming NED. Your prayers comfort me more than you could ever know. Back to discharge day…one of the reasons we left CHOP so late on Monday was because Brooke got her hearing aids and we spent about 3 hours with audiology learning how to put them in, take care of them and the audiologist (Wendy) made some adjustments. Brooke has been doing great with them and wearing them more each day. Can you believe that they came with stickers you can decorate them with? They were already pink and purple! Another audiologist gave her beads to put on them too (one purple and one yellow for each ear…at least they’re NB colors)! They even have Jibbitz (the things you can put on Crocs) type things you can put on them and they gave Brooke a butterfly but I might just have to draw the line with that! My girl loves to accessorize but enough is enough! Well, at least she likes them and that is a blessing (no matter how wild they look)! Tuesday we had a great day at home. Brooke slept until 12:30 and we had a very early dinner at Market Street (3:30). Later that night I tried to flush Brooke’s “tubies” (as I have to do every night to keep them open). The line was sluggish and I tried to force the flush a bit and Brooke screamed in pain grabbing her neck right where the med comp travels. Well, there’s that fear thing again! I called CHOP and the fellow on call was pretty sure there was a clot in the line and he would have our fellow call us today to let me know what he wants us to do. After I hung up with CHOP I called Dr. Dave (at 10pm I might add) and he was over in about 2 minutes to check Brooke out. He assured me that she was ok and allowed me to actually get a decent night sleep. Dr. Dave you are AWESOME!!!! So after talking with Dr. Weiser, our Fellow, this afternoon we tried to get the potential clot taken care of locally with no luck. So off we went back up north again! We got to my Mom’s house in NJ around 8:30pm and have to be at CHOP in the onco clinic first thing in the morning. I do feel more comfortable brining her to CHOP where they do this sort of thing all the time but I am SO SICK of the drive! Brooke’s Med Comp (tubies) is 15 months old which apparently is pretty incredible. Every nurse and doctor are amazed that she still has her original Med Comp and they have all said that they have never seen a child be able to keep their med comp even half this long (most kids have to have theirs out due to line infections before they are even finished with chemo). So once again props to Dr. Dave (and Dr. Jeff, Tonia & Kellie) for doing such great jobs with her dressing changes each week! So hopefully we will be in and out quickly tomorrow and that she will have 2 working lumens. We are trying to keep her line in until she has her end of study scans and tests to spare her from having to get needle sticks and IV’s placed. Brooke is still doing part of her treatment at home: GM-CSF shots until Sunday and Accutane until April 28th and then scans will likely be around the first week of May. Well, it is getting late and I do need to get up early tomorrow but I will update you as soon as I can. Happy St. Patrick's Day! Thank you and God bless, Amy Sunday, March 14, 2010 12:46 AM Coming to an End! Wed 3/10 Wed morning Brooke’s doctor (Dr. Weiser) gave us a tour of Dr. Maris’ Neuroblastoma research lab! This is where every penny that we raise for Brooke’s Fund for Neuroblastoma Research goes. We have turned into CHOP over $25,000 so far from various fundraisers and the sales of Team Brooke shirts and bracelets http://giving.chop.edu/site/TR/Events/General?pxfid=5440&pg=fund&fr_id=1030 Brooke made a poster to give them that said, “Thanks for Fighting for Me and My Friends! XOXO Brooke” and she put pictures of several of our friends at CHOP that also have NB, painted her handprints on it and of course many stickers. We had such a great time and everyone made such a big fuss over Brooke and made her feel so special. We have some great pictures but I’m having some media card issues so after I get back home and can hopefully recover the photos, I will be sure to post them on here. After the tour, Brooke had an Ophthalmology Clinic appt. She has been patching her right eye 2 hours a day for the past month because her amblyopia (lazy eye) had gotten worse again. Also, she has had some other issues with her eyes since her 2nd round of the antibodies back in December that her eye doctor (Dr. Binenbaum) has been watching closely. Everything went well and her eyes seem to be improving. Brooke will have another follow up visit in 2 months and hopefully all her issues will be resolved by that time. After Ophthalmology we headed upstairs for Oncology Clinic to see Dr. Weiser and wait for our room to be ready. I’m happy to say for our last admission (hopefully ever)we got a room on our favorite hall (the south side) with a window to outside (even looking at the rain is better than looking into the ER waiting room). Brooke was so excited from all the events of the day and being back at CHOP that when we got in the room she danced for hours (to the same song I might add, Single Ladies, over and over again). Thurs 3/11 Thurs was an exciting and busy morning. The CBS Early Show was here interviewing, Brooke, Me & Dr. Weiser for a follow up story they did on Comfort Capes in December (here’s a link to the segment that showed in Dec) http://www.cbsnews.com/video/watch/?id=6018224n&tag=api Brooke received a Comfort Cape in January from my friend Kim and loves it so much. I’ll try and post a picture of her in her cape and I will let everyone know when the follow up story with us will air. It was a good thing they were here in the morning before Brooke got hooked up to the morphine and antibodies because she gets some pretty intense mood swings once the meds are going. Once that was done the rest of the day was pretty uneventful (other than the mood swings which are exhausting for everyone around her). Friday 3/12 Mood swings continued but not as intense as usual, she had a low grade fever and needed a blood transfusion. Saturday 3/13/10 Aunt Cheryl braved the monsoon and came to visit and Brooke was busy making cards for every person that walked into the room! A 9 year old boy, Wayne, from Brooke’s school (Salisbury Christian School), was diagnosed on Monday with Stage IV NB and is being treated at Hopkins. We ask that you please add Wayne and his family to your prayer list. We know how long and difficult this road will be for them. One of our good friends at CHOP, Malcolm, who is 11 years old and has Ewings Sarcoma has started a foundation to raise money for research and awareness for pediatric cancer called Make Some Noise-Cure Kids Cancer. I was fortunate enough to be able to attend the kick-off event in January where Malcolm debuted his awareness video “1 in 320”. Here is the link for the video (look for Brooke in itJ) Please take a moment to watch it. http://www.youtube.com/watch?v=mV8xdknGNg8 God Bless, Amy Tuesday, March 09, 2010 10:05 PM Hula Girl I'm just noticing that it has been 19 days since I last posted! Brooke has had a wonderful 3 weeks at home. I’ve been wracking my brain to try to think of all the fun things she has been doing these weeks off but decided to just give you a few of the highlights and try to get to bed early. Sunday, Feb 21st was Brooke’s 6 month anniversary from her second transplant which should mean that she can come off all the transplant precautions but I called Brooke’s transplant Nurse Practitioner and she thought it would be best to keep her on precautions until flu season is over in 1-2 months. We can go out a little more now as long as it is somewhere that isn’t crowded at all and she still cannot be around kids under 3. So for now school, church, malls etc are still out. We went to see a weekday matinee showing of the Chipmunks movie (which she loved) and we were the only ones in the theater. We took Bailey for an emergency trip to the dogwash (Tails & Tubs) after she tried to dig to China from the backyard and we ran into Brooke’s BFF Greyson there giving his dog Asher a bath! It was such a wonderful surprise! Mrs. Katzaman (Brooke’s teacher) came over a couple days and got Brooke caught up on what she has been missing at school. She had a blast with Caleb & Jordan Anderson while Dr. Jeff was over to fill in for Dr. Dave for her dressing change last Sunday. We did a mommy/daughter spur of the moment spa day yesterday. Brooke got a mani/pedi and I got a spa pedicure (an hour of pampering before heading back to CHOP) and had a quick playdate with Riley and Morgan from next door when we got home. Also, over that past few weeks we were able to eat out at MSI a couple of times. Brooke has been eating so much the past couple of weeks! It has been so great to see her appetite back to her pre-cancer days. We had a clinic appt last Wednesday and Brooke was up to an all time high of 31.2 lbs (she was 30.5 lbs the day of diagnosis last year)! We are at Grammy’s right now for the night and heading to CHOP tomorrow for Ophthalmology clinic, followed by Oncology clinic and then she will be admitted for her final round of antibodies! Hoping and praying that this round goes as smoothly as the last one did! Here is a video of Brooke Hula dancing to Jimmy Buffet last Monday. Gotta love her tubies dangling! click on this link: My Little Hula Girl Please pray for all of the mighty cancer warriors… Blessings, Amy Thursday, February 18, 2010 11:25 PM Finally Back Home! Sorry for the delay but YES we are home. We were able to go home Tues late afternoon and we both climbed into bed not long after walking through the door. Brooke did fantastic this round - just a few low grade temperatures and some seriously exhausting mood swings but nothing like the last 3 rounds. Cancer soooo Fears my little girl! Just one more round left (March 10th) and hopefully soon Brooke will be able to do normal 5 year old stuff outside of the house! Brooke had a wonderful Valentine's Day at CHOP and even had a surprise visit from Daddy (yes, you heard that right...Rob actually left the restaurant on Valentine's Day!). She got lots of valentines from the other kids on the floor and from the staff. Have I mentioned how great the staff is??? Monday, Brooke saw an audiologist again to make sure that her hearing has not changed and to get the process moving for getting her hearing aids. All week she kept telling me that she couldn't turn down the volume on the TV because she has hearing loss and needs hearing aids...seriously going to milk this one! She has selected pink hearing aids that fit behind the ears and pink and purple swirl color for the part that goes in the ear - so much for trying to get them to blend in! Aunt Cheryl and cousin Cassidy came with us for her testing and when we got back to the room Aunt Alisyn & Grammy were there waiting! Later that night Uncle Johnny came by to stay with with Brooke so that I could go out to dinner (at POD) with two of my cancer mom buddies. Thanks for a great night out Elise & Julie and John for allowing me the opportunity! Well, hopefully you won't be hearing from me much in the next couple weeks. Thanks again for all the prayers! God Bless, Amy Friday, February 12, 2010 11:17 PM Blessed to be at CHOP I am beginning this entry on such a sad note. Erik Ludwinski, who was such an inspiration to so many Neuroblastoma parents and warriors, passed away on Tuesday from Neuroblastoma at 25 years old. Erik was first diagnosed at age 6 and relapsed at age 20. Erik was an amazing young man whose strength, courage and faith were truly inspiring. He was a voice for all our little warriors battling this awful disease. I had the great pleasure and honor of meeting Erik and his equally inspiring mother, Donna, at clinic just a few months ago. My heart aches for his family and friends…please pray for them. Brooke started with the IL2 and Antibodies yesterday morning. Crazy mood swings were pretty much the only issues while she was awake. Last night on two occasions she had a low grade fever (100.9). If she has 3 low grades (100.4) over a 24 hr period or spikes 101.4 or more than blood cultures are taken and she starts on 3 antibiotics. Earlier tonight she had her third low grade so everything has started. Her blood pressure is on the low side again (80’s/30’s) so doctors have been in to check on her and a fluid bolus was given. Her pulsox was dropping as well into the high 80’s and a respiratory therapist has come into evaluate her. So far not a huge concern but she is being monitored closely. We are so blessed to be here at CHOP. The doctors, nurses and support staff are so dedicated and caring. During the snow storm many stayed as many as 3 nights here at the hospital. God certainly led us to the best possible place last January. I have met 2 more NB kids and families over the past couple of days, Robyn and Elizabeth. Robyn and her family came here from England to be able to get the IL2 & Antibodies and will be living at CHOP and The Ronald McDonald House (in between treatments) for 5 months! Elizabeth will soon be having her stem cell transplant. Please include them in your prayers as well. When it seems rough being snowed in for a couple days and you think you’re going stir crazy, just think about what it must be like for these kids to be essentially isolated for months-years from family, friends and the outside world. WE NEED TO FIND A CURE NOW! Give these kids their childhoods back… God Bless, Amy Wednesday, February 10, 2010 10:50 PM Round 4 Week 1 Brooke finished her 1st week of round 4 on Monday without any complications or issues. We spent Monday night at Grammy’s celebrating Pop-Pop Dave’s birthday with Aunt Alisyn, Uncle Johnny & Aunt Johanna. Tuesday night we wound up getting a hotel room down the street from CHOP so that we would be able to make it to CHOP Wed for her admission for the 2nd week of this round. Brooke had a blast staying in the hotel and kept calling it an adventure! I was happy because the hotel was right next door to Pod (my favorite restaurant in Philly). We got to CHOP this morning with no problem and I’m so glad we stayed in the city (Brooke’s doctor didn’t even make it in). I think most of the nurses stayed the night at the hospital. Well, tomorrow morning she will start with the IL2 and the antibodies. Please keep Brooke in your prayers as this will be a difficult week with many potential issues. Thank you and God Bless, Amy Sunday, January 31, 2010 10:48 PM 2 Week Update Sorry for the long break from updates. We have had a nice uneventful 2 weeks so not much to fill you in on. Brooke's transplant precautions are getting a little more flexible so last Tuesday I took her out of the house for the first time since June (other than for dr. appts)! We took Baily dog for a bath at the doggie wash Tails & Tubs. Brooke had fun helping to give her a bath & then buying her a "good doggie" gift in the guest shop. Next she spent some birthday $ doing a little shopping at her favorite store, Pemberton Pharmacy. Then it was taking the car through the car wash (which I think was Bailey's favorite part of the day). We ended the day with an early dinner at Market Street Inn! She was so excited to be back there again and Chef Joel spoiled her with all her favorites (Salmon, Shrimp, Scallops & rippin' bread). The next day we had to be back up to CHOP for a clinic visit and I bolted back home to make it to the gourmet wine dinner at MSI benefiting the United Way (mmm yummy). Another night, Kellie brought over a new Wii game, Dance Party, and the 3 of us had a great time bustin a move! Brooke kicked both our butts and she sat out half of the dances (Kellie swore her remote was malfunctioning)! Yesterday during the snow storm, we lost power from 6pm - 11pm. Thank goodness we have a gas fireplace! Brooke, Baily and I slept on the living room floor in front of the fireplace all night. Brooke could not wait to get out in the snow but I think she likes the idea of it more than the reality! We lasted about 10 minutes before the tears and the "mommy I'm freezing" started! Bailey on the other hand couldn't get enough of it! We head back to CHOP Wednesday for Round 4. This is another 2 part round (first week is IL2 and the second week is IL2 + antibodies...aka "hell week"). Last time she had one of these rounds the first week was a breeze and the second lived up to its name so please keep her in your prayers. I will post updates while we are there with specific prayer requests. God Bless, Amy Tuesday, January 19, 2010 12:45 AM Blood Pressure still low Brooke was scheduled to be discharged today (Monday) but her blood pressure was low again last night so this morning we decided that staying one more night so that her BP can be monitored would be best. Brooke was thrilled to get to stay another day (sometimes I think she likes it here a little too much!) and I never mind an extra day in our comfort zone of CHOP. It is almost 1am and her last BP was 80/50's so I feel confident that we will go home tomorrow. Thank you so much for all the prayers and encouragement this past round. I love reading everyone's guestbook messages and scripture verses. God Bless, Amy Sunday, January 17, 2010 11:28 PM More Sleepless Nights More Sleepless nights! Brooke's blood pressure dropping was an issue again Friday night but instead of keeping her awake all night like I did Thurs night we just woke her up for each blood pressure check (about every half an hour). Sat night she did great and did not have to be woken up at all. Her BP was low but they were comfortable with it at least. Tonight they are once again running low and even waking her up isn't doing the trick. She is getting a 2nd bolus of fluid at the moment but as usual it doesn't seem to be working. If she has to get a 3rd bolus and it doesn't work we might be headed to the PICU. She is doing very well during the days (just some minor mood swings) it's just these crazy nights she has. The antibody infusion for this round round ended tonight and we are scheduled to be discharged tomorrow but we shall see. I usually count on being here at least one extra day! Please pray that her blood pressure comes up. I met the sweetest little boy today who was just diagnosed with NB Christmas Eve. I feel like everytime we come here I am meeting another new NB family. For something so rare you wouldn't know it by spending a day here at CHOP. Last wed when Brooke was having her MIBG scan there were 13 MIBG's scheduled for that day (that is all neuroblastoma). It breaks my heart every time. No one should have to fight this battle... especially children. Please pray for all the little warriors... God Bless, Amy Friday, January 15, 2010 04:01 PM Terrifying Night As if I'm not tired enough, after writing this entry for the past 1 1/2 hours I became disconnecte?d from the internet and hadn't saved my work! So here I go again... After waiting a week to hear if Brooke's cancer had come back, which Praise God it hasn't, just a little over 24 hours later we had another terrifying night. Last night Brooke's blood pressure dropped dangerously low to 62/25. She was given 2 fluid boluses and a blood transfusion to try to bring it up with no success. The PICU team (doctor and 2 nurses) came to Brooke’s room to evaluate her and thought it would be best for her to get moved up to the PICU (which as a parent of a child with NB these are probably the second most dreaded words you could hear… often NB parents are told if their kids go to the ICU they most likely will not survive it). But as the room full of people were discussing what to do, Brooke woke up ticked off that everyone was talking and making so much noise. We left the room to finish the conversation in the hall when someone else came to the room to do a chest x-ray. Brooke became increasingly agitated that no one was letting her sleep and her blood pressure began to rise! I was afraid to let her go back to sleep so I asked her if she wanted to stay awake and do a craft. We wound up staying awake until 4am doing crafts & then watching a movie but her BP remained at a safer number. The PICU team came back around 12:30 last night to see how she was doing. After watching her going a mile a minute, doing craft after craft only stopping to take pictures of everyone in the room, they decided she was safe to stay on the oncology unit! More answered prayers! So even after not going to sleep until 4am she still woke up at 7:30am raring to go. I’m exhausted but so grateful that her vitals have stabilized and that we were able to stay in our little comfort zone of 3 central. Just to look at her now smiling and playing like nothing ever happened last night it such a miracle. Thank you Kellie, Liz, Dave & John for taking my late night and often frantic/tearful calls! Please pray we have an easier night tonight. God Bless, Amy (Brooke’s very tired mommy) Wednesday, January 13, 2010 10:55 PM All Clear! MIBG Scan clear! Sorry it took so long to get the good news on here and I am going to keep it short to get some sleep. Still not sure what is going on with the pupils. Sent us downstairs to see Brooke's opthamalogist after the scan results were back. He was not sure what was causing the problems but reassured us that there was no swelling behind the eye and optic nerve looked good. Everyone has decided to chalk it up to a reaction from the antibodies and it will eventually resolve once she is done with the antibodies. They will be keeping a close watch on it and she will be continuing with the clinical trial. By the time we were done with everything she didn't get admitted until about 6:30 tonight. She will be starting round 3 of the antibodies first thing in the morning. I will keep you posted on how it's going. Thank you so much for your prayers and support. This past week was so difficult fearing the worst but I guess this is our life now. I don't know how I will ever get used to it. God Bless, Amy Tuesday, January 12, 2010 10:31 PM Pray before MIBG SCAN Just a reminder to please pray that Brooke's cancer has not returned. We are in Philly now at my mom's house. We had a 1:00 appt today at CHOP for her injection for the scan tomorrow. Her scan is scheduled for 11:30am Wed morning. We should have results by the early afternoon when we meet with Dr. Weiser in clinic. I will try to post the results as soon as I am able. Thank you so much. God Bless, Amy Thursday, January 07, 2010 09:29 PM CT scan negative for tumor I will start off letting everyone know that Brooke's CT scan today was negative for any solid tumors (praise God) however we will have to wait to know if the cancer is back until Wed when she has her MIBG scan. It has been a very long day so going to keep this short so I can try to get to sleep early. We left my Mom's house at 6:45 this morning for her CT scan but we weren't able to get the scan done until about 1:00pm! Insurance was denying coverage for it and we found out that they were denying coverage for last nights scan as well (they wanted us to drive to Maryland to have it done....ARE YOU KIDDING ME???). It took about 4 hours but CHOP was able to eventually get it approved but in the meantime Brooke was getting very agitated and starving since she wasn't allowed to eat until after the scan! I have no idea why and we have not, up until this point, had any problems with our insurance company. Hopefully this will be an isolated incedent. We got home a little after 8 and I just got her to bed around 9pm but wanted to let everyone know the results. This will be a difficult week of waiting...please keep Brooke in your prayers. Thank you so much. God Bless, Amy Wednesday, January 06, 2010 10:53 PM Please Pray for Brooke Please pray for Brooke. There is a possability that the Neuroblastoma could be back. We had a clinic appt today at CHOP and while we were waiting to see the doctor I noticed that her pupils were unilateral (her right pupil was constricted & left was dialated) and were not responding to light. We were quickly taken for a head CT scan which was negative (I believe they were ruling out a brain tumor or bleed). However there is a possablilty that it's Horner's Syndrom again which presented a week after she was initially diagnosed last January. Horner's Syndrome is typically one of the first side effects from NB to present and what can cause doctors to test for neuroblastoma. The attending, Dr. Adamson, was later able to get the pupils to respond to light changes. We are staying the night in NJ with my mom and have to be back at CHOP at 7:30am for an 8:00appt. They are going to do a chest and neck CT scan with contrast. Dr. Weiser is also going to try to make an appt Tues with nucleor medicine for an injection and then have an MIBG scan on Wed. Another thing that is concerning is last night at 4am Brooke woke up screaming in pain (legs) and it took her about 30 mins to fall back asleep. This was also what was happening when she was first diagnosed. I am trying to stay hopeful but fear is consuming me. I just keep thinking that this can't be happening...please God don't let it be this...she has come so far and done so well. Please don't take my baby from me...I really can't bring myself to write any more tonight I just wanted to let everyone know what is going on and to please, please, please pray for her. God Bless, Amy Tuesday, January 05, 2010 12:26 PM 1 Year Anniversary 1 YEAR ANNIVERSARY!? Well, here we are, exactly one year from the day that Brooke was diagnosed! It feels like a lifetime to me and I know that our lives have been forever changed. I am not the same person I was 1 year ago today. My faith has grown stronger. I really don’t know how a parent survives their child being diagnosed with cancer without having a relationship with God. I know that my faith has been tested many times on this journey but I also know that I always feel the most at peace when I focus on scripture. I know that there are a great number of prayers going up for Brooke everyday and I know that God is listening and I thank everyone for that from the bottom of my heart. I believe with all that I am that God has great plans for Brooke. We have been so blessed by the love and support that we have received and look forward to being able to pay it forward to others going through difficult times. To recap what Brooke has been through this past year: 8 rounds of chemo (the last 2 of which were lethal doses followed by 2 Stem Cell Transplants), 3 surgeries (2 med comp “tubies” placements in January ’09 and her right Adrenal Gland was removed in May), her own stem cells were harvested for transplant in Feb, she had 12 rounds of radiation to her skull, abdomen & both femurs, 4 ambulance trips from PRMC in Salisbury to CHOP, dozens of blood and platelet transfusions (I lost track long ago of how many), 1 MRI, 5 Bone Marrow Biopsies (I think), numerous MIBG scans, Echocardiograms, EKG’s, X-rays & CT scans (have you seen the recent reports regarding the dangers of having too many CT scans? They said a person having 5 CT’s in a lifetime is like the equivalent of Hiroshima to the body…Brooke’s already had that many and many more to come), she has completed 2 of 5 rounds of antibodies & IL2, she has high frequency hearing loss as a result of the chemo and will be getting hearing aids for both ears, she has spent approximately 25 weeks as an inpatient in the hospital (not including the 2 ½ weeks outpatient for radiation at Univ of Penn). In the process she has become an unknowing poster child for Neuroblastoma and pediatric cancer with her story being told in USA Today, Salisbury’s The Daily Times, SBYNEWS, Cool Kids Campaign newspaper, local tv stations WBOC & WMDT and Philadelphia’s Action News. Last month my mom was in a waiting room reading south jersey’s The Courier Post newspaper and Brooke’s picture was in there for a story about kids who beat cancer still face heart risks (nothing about Brooke in the story they just used her picture-she must be the stock photo for pediatric cancer now)! Any attention that will help bring awareness to NB and pediatric cancer is definitely a blessing as the funding is scarce. Salisbury, MD & my hometown Westmont, NJ have rallied together to form Team Brooke and had numerous fundraisers for Brooke’s medical bills and for the NB Research Fund that we have created at CHOP in Brooke’s name. There were golf tournaments, bonfires, beef & beers, basket bingos, walks, concerts, sub sales, bake sales, and so many others. So many people have come together to help our family and we will forever be grateful. This year has been a rollercoaster and it’s not over yet but we are getting there. I’m attaching a couple of videos I’ve made. The first one I posted about a month ago with the first couple months of Brooke’s journey and the second picks up around where the first leaves off. Hope you enjoy them and thank you again for coming along for the ride. Brooke's Journey with Neuroblastoma Brooke's Journey with Neuroblastoma part 2 God Bless, Amy Thursday, December 31, 2009 01:03 AM Christmas Update Hello Everyone, Just wanted to catch you up on the past week. Brooke was discharged from CHOP last Wed late afternoon. I was very nervous about leaving as she was still not even close to herself yet. She went right to bed when we got home and slept most of Christmas Eve day. Christmas day wasn't much better. She woke up at about 10am and would take little cat naps between opening presents. She would just lay down on the floor where she was opening her gifts and rest for a short time then sit up and open a few more. After opening gifts she fell asleep at the table during brunch with Grammy, Nana & Pop Pop Vince and then moved to the couch to sleep some more. It was kind of scary how similiar it was to last Christmas (when her symptoms started). It was a difficult day emotionally for me and adding to the emotions was hearing that they had found Sarah Foxwell's body...Please pray for her family...I can't and don't want to even imagine what they are going through. I hope that many attended her vigil tonight. The weekend was much better for Brooke. She is able to stay awake most of the day now and is finally getting to enjoy her Christmas presents. Other than stomach pains she is starting to feel better and we have a nice little break before having to go back to start round 3 (Jan 13th). Have a Blessed New Year, Amy Wednesday, December 23, 2009 01:22 AM Praying to make it home for Christmas... Quick update: Brooke was not discharged on Monday like was scheduled. Her vitals looked good that day but she continued to sleep the entire day like she had sat & sun and would only wake up for a few minutes at a time. She was also not discharged Tuesday for the same reason. she started to perk up a little around 3pm and I was actually able to keep her up long enough to give her a bath. She also ate for the first time since friday night (only a small cup of pears & 2 peanut butter crackers but it was something). Not sure yet about leaving wed - we will have to see how she does in the morning. I am exhausted so I'll end the update here and catch you up as soon as I can. I'm going to try to attach links for the 2 news stories recently done on Brooke. God Bless, Amy WBOC in Salisbury (aired 12/21) A Little Girl's Brave Cancer Battle Action News channel 6 in Philadelphia (aired 12/22) http://abclocal.go.com/wpvi/video?id=7185098 Sunday, December 20, 2009 11:34 PM Hell Week Continues Well, "Hell Week" is definitely living up to it's name! Since my last entry Brooke's temperature has remained anywhere between 102-104.8. Her last temp was actually starting to get a little more normal (100.3) so hopefully the fever is gone now for good. She needed to be on "blow by" oxygen Thurs & Fri night but did well without last night. Her heart rate got as high as 172 but averaged in the 140's (currently 139). Her blood pressure was fairly stable throughout this round. The hives went away once they slowed down the rate of her infussion and never came back. Enough of the technical stuff...overall she has just felt plain awful. she is in pain and has been sleeping most of the past 2 days. she never even felt up to getting out of bed to look at the snow out the window (which, by the way, I just saw on the news that Philly got 23"). Saturday she asked me to go outside (once the snow stopped), build her a snowman & take a picture of it for her but Sunday she never wanted me to leave the room. Hopefully there will still be snow at home when we get there (my guess is there will be)! Brooke is due to be discharged tomorrow (Monday) but looking at her right now I don't know how that is possible. Everyone says though that once the infussions are done (antibodies 4:00am & IL2 9:30am) that the side effects should all stop. So we will see how she is doing tomorrow and take it from there. I'm going to go ahead and keep this short tonight. I'm attaching a YouTube video just for fun that I put together back in June of the first 6 months of treatment. It's very short (about 1 1/2 minutes): Brooke's Journey with Neuroblastoma Please Pray that all the side effects are gone by morning and that Brooke is feeling better. Thank you and God bless, Amy Friday, December 18, 2009 12:22 AM Please Pray for Brooke this Week I am sitting here staring at Brooke's monitors...watching her pulsox continue to dip down to 90% (under 90 and she gets put back on oxygen again)....watching her heart rate keep climbing (currently 143)...how can I go to sleep??? Brooke has had a mildly rough day but an increasingly difficult evening. She has been having severe mood swings all day but much worse between 8pm-11 when she also broke out in horrendous hives all over her tiny body causing her so much discomfort to the point that they stopped her infussion for a couple of hours to try to get the hives to go away (which has helped). I noticed at about 10:30 that both her pupils were very constricted even in the darkened room and they weren't responding to changes in light/dark (hers are typically very large even in daylight). The resident on tonight thought it could be caused from the additional benedryl she received for the hives and or the morphine she is getting for the pain but was going to contact the Fellow on Call to be sure (haven't heard back yet). Her skin is clammy and her head is very warm but has not reach the point of a temp. I keep having to remind myself "20% increase chance of survival, 20% increase chance of survival (what this clinical trial will hopefully give her). This is what keeps me going when I watch her having to go through all of this. As I am writing this her pulsox is dropping under 90% and the nurse just arrived and she is trying her on "blow by oxygen" (resting the oxygen mask a couple of inches away from her nose/mouth and letting the O2 blow by instead of using the nasal canula)...seems to be working at the moment but now her temperature just jumped up to 104 (I'm assuming another call to the dr.). It is now 2:00am and the nurse just returned to tell me the resident ordered a chest xray so they are bringing up a portable xray machine sometime soon. This is going to be a long night... Please pray for Brooke this week. She said the most beautiful prayer tonight before she finally fell asleep. Listening to her pray is my favorite part of the day. She prays for so many others and I love when she prays for herself she says, "...and please help me, Brooke, to..." (as if God does not know her name)! I tell her all the time that He knows her better than even I do but still she always seems to want to be sure! Rob forwarded me the most amazing video Christmas card for Brooke last night that I read this morning. It is from The Michael Job Center for Orphan Girls in India and I wanted to share it with everyone. Please take the time to watch the video (I believe it is about 5min and worth every second). I am touched beyond words that these precious little girls with all that they have been through in their own lives are praying for Brooke and closely following her journey (you can even see in one of the video clips my journal update from last week posted on their wall). Please pray for these little angels and if you want to know more about the Center I have included a link to their website. Utube Video Christmas Card for Brooke: A Video Merry Christmas Card to Brooke Milford The Michael Job Center for Orphan Girls: http://www.michaeljobcenter.com/index.php God Bless, Amy Wednesday, December 16, 2009 10:12 PM Hell Week Starts Tomorrow Well, the week of IL2's went without a hitch (well a very minor one anyway). No side effects until the last night when her temp started rising but never got over 100.7. We wound up staying an extra night just to monitor her. She was discharged Tues at 2pm and we went to NJ and stayed the night at my brother (Uncle Johnny) & Johanna's house. Brooke had a great time and had some special treats (Santa rode down their street on a fire truck & Johanna's brother came over and put on a great magic show that had us both mesmerized)! Came back to CHOP this morning and we were interviewed for Action News (Channel 6 in Philly). St. Baldrick's Foundation (org. that raises money for ped. cancer by people volunteering to shave their heads and getting sponsors for it) donated a 1/2 million dollars to CHOP for a specific Neuroblastoma research project and they wanted to interview an NB family. They will be airing the story either this Friday or next week sometime. Before we left for CHOP last week Steve Hammond from WBOC in Salisbury came to our house and interviewed the 3 of us for a story that will be airing next week. Brooke is getting to be a pro at this stuff! Brooke had a blood transfusion tonight and will start "Hell Week" (IL2 & antibodies) tomorrow (Thurs) morning. Please pray that the side effects are minimal. Thank you & God Bless, Amy Thursday, December 10, 2009 10:21 PM Immunotherapy Round 2 Hello Everyone, First of all, thank you so much for hanging in there with us after all this time. There is still such a long way to go. Thank you also for everyone that sent cards and gifts for Brooke's 5th birthday on 11/27. She was able to enjoy 3 mini birthday parties with family and Dr. Dave & Miss Liz (honorary family at this point)! She had a good couple weeks at home and was able to gain the 3 lbs she lost during her last treatment. Part of this phase of her treatment involves taking the drug Accutane (usually prescribed for severe acne) which only comes in pill form so she had to learn how to swallow pills. She has done remarkably well (not surprising to her proud mama) and has for the past 14 days been taking 4 pills a day. Brooke was admitted to CHOP yesterday (Wed) and started the first part (IL2) of her second round of Immunotherapy this morning. So far she is tolerating it well but this is typically a pretty easy week while next week (thurs) when she starts the 2nd part of round 2 (IL2 + antibodies) is typically very difficult. Please keep her in your prayers. She hopefully gets a mini break between the 2 parts and may be discharged on Mon for about 48 hrs. If all goes well with the 2nd part she should be discharged on Mon 12/21 (hoping we make it home for Christmas)! From what I understand, most kids feel pretty cruddy for about a week after this round. It was Christmas Eve last year when her syptoms started and she felt pretty bad last Christmas day. Would love to see her feeling strong and great this year and really be able to enjoy herself. Knowing Brooke, she won't care where she is on Christmas day. She is just as happy being here at CHOP as she is at home! Either way we are just truly blessed that she is with us this Christmas. I know everyone is probably stressed at the moment and franticly trying to get ready for the holidays but try to take a deep breath and enjoy this time of year with your loved ones and remember the true meaning of Christmas. I will do my best to keep you posted but hoping for an uneventful week (2 uneventful weeks would be fantastic)! Blessings, Amy Friday, November 27, 2009 02:42 AM Happy Thanksgiving Happy Thanksgiving (or I guess since it's 1:12am happy belated Thanksgiving and now Brooke’s 5th birthday)! I couldn't sleep last night just thinking about how thankful I am that Brooke is with us this Thanksgiving... How a year ago on this day Brooke was celebrating her 4th birthday... How everything was so normal and worry free and having no idea that this wicked beast was spreading throughout Brooke's tiny little body. My life will never be the same as it was last Thanksgiving. In spite of the pain & fear of this past year there are still so many blessings. I thought that I knew everything there was to know about Brooke but I had no idea how amazing she truly is. I honestly admire her more than any person I have ever met. Did you ever think you could meet a person that could find complete and utter joy in absolutely anything and everything? Someone who could find joy in having cancer, going through chemo, having their hair fall out, needing hearing aids and glasses? If you're blessed to know Brooke then you have. Brooke has never met a person she doesn't like...She does not see people by the color of their skin, their age, their abilities or disabilities, the clothes they wear, how rich or poor they are. She looks at the beauty in everything around her…she is mesmerized by the colors in the sky when the sun is setting…she thinks that every leaf on the ground is such a treasure and every broken seashell on the beach is worth holding onto. She learned the entire Lord’s Prayer at 3 years old (I didn’t think it was even possible but boy did she prove me wrong). She is always thinking of others -don’t get me wrong my little girl loves getting gifts! – but I can’t tell you how many times she has opened a present and said maybe we should give this to our hospital ER (PRMC) because the kids there don’t have toys to play with or someone gives her money and she says that she would like to donate it to her research fund (what 4 yr old says that? I guess for that matter -how many 4 yr olds have a research fund?)…Don’t be surprised if you are ever visiting her at our house and she won’t let you leave without taking something of hers with you (even something she treasures)! She prays every night from her heart…she prays for her friends at home and for specific kids at CHOP (some she has met once or twice and some she has only heard me talk about but she remembers each name and prays for them and their families), she prays for things like “Nana getting home safely” after she has come up to visit for a couple of hours, she prays for Grover (her buddy Greyson’s doggie that passed away last month), she still prays for Dr. Alvarado and his family since he passed away in August. She thinks about things so deeply and so honestly and with such wisdom. I hope that 20 years from today Brooke is looking back through all these journal entries and guestbook messages and knows how truly special and loved she is and always has been. God Bless you my sweet little girl! And God bless my family & friends, church, community and all of the amazing people that He has brought into our lives this past year. I am so thankful for each and every one of you and I am so thankful for the wonderful, brilliant and caring doctors, nurses, and of course child life specialists at CHOP that are the reason Brooke loves being at CHOP so much. Blessings to all, Amy Monday, November 23, 2009 12:12 AM Possible Pneumonia Hi everyone, It's after midnight and I need to get to sleep since the nights are usually the most difficult I get very little sleep. The past three nights Brooke has needed to be put on oxygen. Friday night her pulsox dropped to 83% (should be above 90% minimum) and she needed oxygen until about 1:00 in the afternoon. They did a chest xray Sat morning and they think she has pneumonia or a collapsed lung but are leaning toward pneumonia. She will be getting a repeat xray done tomorrow morning (Monday). They have also done some other tests and should get results late tomorrow on those. Don't think we will be getting out of here Monday as planned - which I would not feel comfortable leaving in light of the situation anyway. She has been spiking fevers (up to 104.1) off and on through out the days and nights (which is typical with this clinical trial but still tough as a parent to see). Her blood pressure has improved since the first day. She is due to get her 2nd blood transfusion this week any minute now (her hemaglobin was 7 last night but they weren't able to give the transfusion while getting her antibodies infusion so it had to wait until tonight). We have been missing Grammy so much this week as she has been home sick. Uncle Johnny & aunt Johanna have been coming in when they can (Wed, Fri & Sat) and it's always a bright spot in our day. Daddy came to visit yesterday and Brooke was talking a mile a minute the entire time he was here (she was so excited to see him) and I got to see the light of day for the first time since Wed (we don't have an outside window - just a noisy view of the ER waiting room). Also, had a fun visit with aunt Cheryl & cousin Brian today. Whenever we have visitors she kicks me to the curb (she knows she can get away with anything when I'm gone) but the minute they're gone I can't even stand outside the door without her telling me she needs me! We brought in walkie talkies this time so that if I'm putting laundry in or running down to the caffeteria she can talk to me if she needs me but they don't work in the caffeteria. We practiced with them all last week at home. She's so cute on them and always ends with "over & out" (no idea where she got it from). Well, those are the highlights and lowlights since Thurs. Please pray that her lungs clear quickly and that she doesn't get worse. Also, please pray for Grammy to get better soon...we miss her so much. God Bless, Amy The Lord is my Strength and my Shield; my heart trusts in, relies on, and confidently leans on Him, and I am helped; therefore my heart greatly rejoices, and with my song will I praise Him. -Psalm 28:7 Sunday, November 22, 2009 02:25 AM Prayers are working! Hello everybody, it’s me Brookie! It has been a very long time since I have spoken to you all. I feel like it has been a lifetime ago, I guess you could say it sure has felt like a lifetime of treatments. I do not even know where to begin, so much has happened and taken place. For now I just wish to say Thank you to everyone who has kept me in there prayers! As you can tell, they have been working. Along this journey there have been many ups and downs, but what has not changed is the faith and hope that my family, friends, community and everyone out there has had since the beginning. I just wanted to take a minute and Thank each and every person who has been a part of my road to recovery. As I begin this next round of treatments, I just wanted to reflect on how far I have come and been blessed by all the support. Daddy posted some new pictures and told me that the whole community was eating subs on Friday to help me and all the other Cool Kids out there! Thank you to everyone involved with that and all the sub makers who took time out of their busy lives to volunteer. Maybe Daddy could convince some of you to come work at Market Street? Well it is very late once again, so I should get going; but from the bottom of my heart many thanks to everyone, without you all this would have been soooo much harder! Brooke PS. Thank you Mommy for always being there for me and spending this whole year by my side and protecting me and comforting me. I know I do not have very much patience, but you have all the patience in the world! I Love You Mommy! Thursday, November 19, 2009 10:45 PM Admitted to start Immunotherapy Trial this morning It has been a long day and I'm tired but wanted to at least post a quick update. Brooke and I headed to CHOP yesterday morning and was admitted to start immunotherapy trial this morning. Brooke the eternal optimist that she is was so excited to get here yesterday (she missed all of the inpatient staff so much -she hasn't seen them since we left on Sept 10th after transplant). Thank you so much John & Johanna for coming in last night to help us get moved in (Brooke had a blast with you both) and for bringing me sushi takeout from Pod! The infusion started at roughly 10am and lasts for 10 hrs each day. She did well the first couple of hours and then the pain started (first in her feet, then her back & neck and her pinkie finger). She is on continuous morphine for pain and was hitting the button for more pretty much all day. She asked me today to please ask everyone to pray for her pain to go away. The last couple of hours she has been having some issues with blood pressure(73/38), heart rate(142), fluid retention and she is burning up but her temp is dropping instead of rising. Dr. was just in to check on her and they are giving her a small fluid bolus and will continue to monitor all her vitals throughout the night. Please pray for us both and all the children here going through more than any child should ever have to (everytime we come back I meet another parent whose child was just diagnosed with some type of pediatric cancer...it takes me back to last January and all the emotions...) Blessings, Amy Thursday, November 12, 2009 09:57 PM Bone Marrow Biopsy CLEAR! Hi Everyone, So sorry for not updating sooner. Had every intention of getting on here Monday to update but with Brooke feeling better her energy level is getting back to normal and I'm exhausted once she falls asleep at night! Anyway, if you haven't already heard...Brooke's bone marrow biopsy came back CLEAR so she is officially considered NED (No Evidence of Disease)...WOO HOO! This doesn't change her treatment plan...she will still be starting the immunotherapy clinical trial on Wednesday. As I've said before NB is a very aggressive cancer and we have to do everything we can to reduce the risks of it coming back so please keep her in your prayers. Today Brooke and I headed up to CHOP for a clinic visit and an Echocardiogram and then to Grammy's house for the night. Tomorrow (Friday) we go back to CHOP for an Audiology exam followed by an Opthalmology exam. Please pray for minimal hearing loss (although I'm afraid it is significant) and stable or improved vision. I will try to update on the results of Fridays exams by Saturday. Please also pray for all the other children that are fighting the beast. God bless, Amy Friday, November 06, 2009 10:17 PM MIBG scan is CLEAR! Thurs afternoon Brooke had her MIBG scan and Dr. Weiser called me Thurs evening with the news that the scan was clear. Brooke had her Bone Marrow Biopsy on Thurs morning. Once again, like during her radiation, she came out of sedation with emergence delirium (screaming, crying, kicking...). She had asked me to have a McDonald's fruit and yogurt parfait ready for her when she woke up which she grabed from me-took a huge spoonful and launched it! Once she calmed down a little she wound up eating 3 of them-she couldn't eat them fast enough! I think donuts are out and McDonalds Parfaits are in now! She was given morphine for the pain and we headed down for her MIBG. She did a great job being still as a statue for almost the whole scan (she got a little antsy the last couple minutes when the Little Bill video she was watching cut off). We will be heading back up to CHOP next week for some more tests. Thursday she will have a clinic visit for clinical trial labs and friday she will have an audiology exam and an opthomology appointment. I have noticed alot the past couple of weeks that she seems to be having difficulty hearing (prior to her transplants she had high frequency hearing loss and we were expecting more loss after her 2nd transplant due to the carboplatin). She is also way past due for an eye exam and has been lately telling me that her glasses aren't working as well. Please keep Brooke in your prayers...she has such a long road still ahead. We are hoping that the bone marrow biopsy results are back on Monday and we hear the sweet words "No Evidence of Disease"! God Bless, Amy Wednesday, November 04, 2009 11:28 PM CT Scan is CLEAR! Brooke had her abdominal CT Scan today and there was no evidence of disease in the area where it all started (her initial solid tumor was in her right adrenal gland which was removed in May). She still has her bone marrow biopsy tomorrow (Thurs) morning (arrive at 8:30am) and an MIBG scan at 1:30pm. Keep praying for NED! I met with Dr. Mosse regarding the Chimeric Anitbody (ch14.18) clinical trial that Brooke is enrolled in and will begin on Nov. 18th and will last about 6 months. The info I am about to give you is from the packet I received from CHOP. Children with high risk Neuroblastoma often respond to standard treatment at first, but there is a high risk that the cancer will come back. This study is being done to try and improve the likelihood that the cancer will not come back. Brooke will receive the experimental treatment ch14.18 + IL2 + GM-CSF + Accutane. This study involves the use of ch14.18, a monoclonal antibody. Monoclonal antibodies are proteins made in the lab, designed to attach to specific cancer cells. Ch14.18 was designed to attach to Neuroblastoma cells and other cancer cells that have GD-2 on their cells. When ch14.18 attaches to the NB cells, the body’s immune system is stimulated to attack and kill the NB cells. Ch14.18 represents a new kind of cancer therapy that, unlike chemotherapy and radiation, targets the destruction of cancer cells without destroying nearby healthy cells. IL2 is a substance that is similar to a substance made by the body in all individuals. Under normal circumstances, the body makes small amounts of IL2 that helps white blood cells fight infection. It is now possible to make IL2 outside the body and give humans much higher doses than their own body makes. There is some evidence that IL2 increases the anti-cancer effect of monoclonal antibodies like ch14.18. GM-CSF helps the body to produce infection fighting white blood cells. Accutane is a drug closely related to vitamin A and has been shown to help stop the multiplication of remaining NB cells. There are 5 very long pages of risks and side effects from these drugs which I won’t go into detail on but the common side effects that I’ve heard about are extreme pain, high fevers & rash/hives. If you look at all the possible side effects you would probably wonder why we would choose to put Brooke through all of this. The fact is, without this her chances of long term survival aren’t great. This clinical trial has been shown to increase survival 20% which is huge. Brooke has done so well with all of her treatments so far and is so tough that I just hope and pray that she will tolerate this well too. Well , it’s getting late and I’m drained. Please keep Brooke in your prayers. Thurs is a big day for us. I’m not sure when we will get the results (MIBG results hopefully by Friday but Bone Marrow Biopsies seem to take a few days). I will try to post something as soon as I hear. God Bless, Amy Tuesday, November 03, 2009 11:40 PM Quick Note Just a quick update to let everyone know that Brooke's tests have been moved up to this week. Brooke & I arrived in NJ tonight around 8:45pm (we're staying at Grammy's house for a couple nights). She is scheduled for a CT Scan tomorrow (Wed) at 12:30 with an 11:30 arrival to start drinking the contrast (she does not enjoy that at all). Once we are done with the scan she will get an injection for her MIBG Scan. Then we will head over to clinic where I will be meeting with the doctors to discuss the immunotherapy clinical trial that Brooke will be starting on Nov. 18th. Thursday morning we will head back over to CHOP first thing in the morning (don't have a time yet but usually between 8-8:30am) for a bone marrow biopsy. Brooke's last biopsy (June I think) showed that there was still Neuroblastoma in her marrow even after 6 rounds of chemo. Praying that the 2 weeks of high dose chemo from her 2 transplants mopped up any remaining cancer. Thurs afternoon at 1:00pm she will have another MIBG scan (Brooke's last MIBG that was done on Sept 10th was clear and praying that this is still the case). I've heard other parents talk about how stressful scan weeks are. Neuroblastoma is such an aggressive cancer and there is such a high risk of it coming back. Please keep Brooke in your prayers the next couple of days and pray for NED-No Evidence of Disease!!!! God Bless, Amy Thursday, October 29, 2009 02:28 AM What's been happening over the past month Sorry for the lack of updates (not a whole lot to update on which is a good thing but I know it’s been almost a month). Brooke finished her 12 radiation treatments on Fri October 16th. It was a rough 2 ½ weeks. Brooke did fine with the radiation but had a really tough time with coming out of sedation (screaming, crying, kicking & flailing) pretty much every day (some days were much worse than others). It would last about 30-45 minutes but seemed like hours at the time. Grammy was a trooper and got up every morning between 5-5:30 am to come with us. A dear family friend, Bill Hoover, gave Grammy a break one morning and came in her place (lucky for him it was one of Brooke’s easier days)! Thanks to everyone who sent cards for Brooke to Grammy's house (Brooke thought that was pretty cool). Tuesday the 13th Brooke made it to the big time and was on the cover of USA Today 4-year-old with cancer moves town into action - and Salisbury’s The Daily Times http://www.delmarvanow.com/apps/pbcs.dll/article?AID=/200910130432/NEWS01/910130359! We have had so many people contact us, from all over the country that saw the article and have sent cards, gifts, donations, phone calls and emails of support. Justin Long and Drew Barrymore even called Rob at Market Street one night (man…why couldn’t they have looked up our home number)! Grandpa Greg and Grandma Millie came for a visit Oct 17th – 21st. Boy did Brooke have a great time! She sure kept them both hopping (I was exhausted just watching them play)! Friday, the 23rd, Brooke’s teacher, Mrs. Katzaman came over again and brought activities that her classmates have been working on. Nana came on Monday to play and let me get out of the house to run some errands and get a massage! And of course, one of Brooke (& Bailey’s) closest buddies, Miss Liz, has been coming by for frequent “playdates”. Tuesday, the 27th, Make-A-Wish volunteers came to the house to meet Brooke and get her Wish - to go to Disney of course (despite my campaigning to meet James Taylor she decided on Disney…just kidding…well, sort of…). Disney wishes sound awesome-from what I’ve heard they really make the experience “magical”! We will have the time of our lives and Brooke is so excited! We are hoping to wait until Brooke is done with her treatments and are thinking maybe May or June. Brooke is scheduled to go up to CHOP next wed for clinic and I will be meeting with the doctors about Brooke’s next phase of treatments (antibodies clinical trial…I’ll tell you more about that once I have the meeting). The 2nd week of Nov we will head up again for a bunch of out-patient tests (MIBG, CT scan, bone marrow biopsy and labs) and then she will be admitted the 2nd or 3rd week of Nov to start the antibodies. As you can see November will be a big month so I will try to do better with the updates. God Bless, Amy Wednesday, September 30, 2009 11:06 PM Update On Being Home & The Start Of Radiation Sorry for no updates since we’ve been home. First couple of weeks were tough. She didn’t have any energy at all and her taste buds were shot, so while she was very motivated to eat nothing tasted right to her and it became very frustrating. Last Wed, the 23rd, Brooke had an appt at Univ. of Penn to get set up for her radiation and to get her tattoos (6 small dots about the size of a freckle). I found out that the plans have changed for her radiation. They (about a dozen radiation oncologists) have decided that her entire skull needs to have radiation so the planning has become more complex and her radiation start date has been postponed (was supposed to start on Mon the 28th) and will now start on Thurs October 1st (9:30am appt with an arrival time of 7:25). It is scary enough that she is getting radiation but the fact that her whole skull is being radiated is terrifying. They assured me that they will do everything they can to spare as much as her brain as possible but some will get through. Please, if you will, pray for her brain to be spared as much as possible if not totally. She will also be getting radiation to the surrounding areas from where her initial tumor was (the Right adrenal gland) and also both of her femurs. She will be getting her radiation treatments daily for 12 business days (starting tomorrow morning). The past week has been much better. She was finally feeling up to a playdate on Thurs and asked her buddy Greyson to come over. They had so much fun riding around in the Barbie Jeep and chasing bubbles in the front yard with Bailey. A photographer also came over that day to take some pictures of Brooke for an article that is supposed to be going into USA Today (sometime mid October). We’ll keep you posted on that! Brooke had a wonderful visit Friday with her teacher, Mrs. Katzaman, who brought her the activities that the other kids have been doing in her class. Brooke had a great time and was so happy to meet her teacher. God bless you Mrs. Katzaman that was so thoughtful of you! Brooke and I drove up to NJ for the night Sat for the Parkway Run/Walk in Philly on Sunday which raised money for pediatric cancer research at CHOP (Brooke stayed with Grammy at her house). In spite of the rainy weather it was a wonderful event…Go Team Brooke! Thanks to all the members of our team (We wound up with 56 people on our team-not bad for our first year)! The event raised over $550,000! We headed back up to NJ today. We will be staying at Grammy’s while Brooke is getting her radiation treatments as an outpatient. Brooke had a clinic appt this afternoon. Her Red Blood Cells were low for radiation (9.2 and they’re supposed to be 10) but it was too late to get a blood transfusion (takes about 3 hours) so they told us to come back tomorrow as soon as she is done with radiation. They didn’t think that it should cause a delay in radiation since she will get the transfusion right after (please pray that it all goes well). Also, please pray for Rob tomorrow morning as he will be leaving our house at 4am to get here in time to go with us. Today was Rob’s birthday but as most special occasions this year for us we didn’t get a chance to celebrate it. Brooke wants to give him his presents in the hospital tomorrow and maybe eventually we’ll even get to give him a birthday cake! I think we can all guess what his birthday wish will be when he blows out the candles! Well, I’m probably missing a lot of info but I really need to try to get some sleep tonight for the big day tomorrow but wanted to keep everyone posted. God Bless, Amy Thursday, September 10, 2009 10:03 PM MIBG SCANS ARE CLEAR & We Are Back Home Again! Brooke had her MIBG scan this morning and the results are in and the scans indicate that there is NO presence of Neuroblastoma in her body! She will still need to get a Bone Marrow Biopsy to make sure that the marrow is clear as well but this is such great news!!! We have waited so long to hear that news! Thank you all so much for all the prayers! We did find out today that although her scans are clear now they will be doing radiation to the areas (skull & tops of both femurs) where her last scans back in May showed she had NB as well as the abdominal area where the initial tumor started. We will be heading back up to start radiation at University of Penn Wednesday Sept. 23 (initial appt. to do all the calculations and she will get her tattoo’s) with radiation starting that next Mon the 28th. She will get radiation for 12 straight days (with breaks on the weekends) as an outpatient. This has been such a great day for us and to top it all off we got a very special visit from David Akers of the Philadelphia Eagles this afternoon before we left. I was so impressed, not just by the fact that he is a great player, but that he was so genuine, kind and caring and he dedicates so much time, effort and money to help the kids at CHOP and makes numerous visits there to meet with the kids. He spent about 45 minutes with us in the room and Brooke really got a “kick” (sorry, I had to say it) out of him. He was so great with her and she was so happy to share her great news with him! Thank you so much Sandy Dickerson for setting this visit up! Well, we finally got home tonight at 9:00pm and are all very tired but we are just busting at the seams with joy right now and wanted to share this all with you. We know that with this disease we always have to be cautiously optimistic and we still have so far to go but with all the struggles it is just such a joy to have moments to celebrate! We have learned to appreciate every good day and even the bad but today we feel doubly blessed. As we approach the anniversary tomorrow of September 11th I would also like to remind everyone to please pray for the families who lost loved ones on that tragic day and let us never forget. Thank you and God Bless, Amy Thursday, September 10, 2009 12:55 AM CALLING ALL PRAYER WARRIORS! Monday 9/7 Transplant Day +17: Happy Labor Day and Happy Birthday to Uncle Johnny. Brooke was very excited to decorate our room to surprise Uncle Johnny this morning. She has pretty much missed all of her friend’s and family’s birthdays this year (which has been tough because she loves a party) so it was nice for her to be able to celebrate something. Tuesday 9/8 Transplant Day +18: Brooke had a very restless night sleep. Had OT with Erin this morning but did not cooperate much. She complained of stomach pain pretty much all day. Hasn’t had much energy. Not eating anything but drank her minimum fluid goal for the day of 6oz. This is her third straight day of not needing a platelet transfusion which is a good sign. I hope and pray that she starts feeling better soon. She has her heart set on going home Thursday but I’m really starting wonder if she is ready. Its scary enough taking her home but so much more stressful when she is not feeling herself. Wednesday 9/10 Transplant Day +19: Brooke was still complaining of stomach pain all morning (they think that it is from not eating for so long). Had PT this morning but was not cooperating at all (may get PT at home). She seemed to be feeling better by the afternoon (her mood was much better anyway). She ate some ice cream & a small amount of yogurt today but was a little shy of her fluid goal. Tomorrow is a big day for all of us. Aside from the obvious of getting to go home, Brooke will be having an MIBG Scan in the morning. This scan detects the presence of Neuroblastoma in the body. As I sat and watched the monitor for her 1st MIBG scan back in January I remember the horror as I saw her entire skeleton light up like a Christmas tree indicating that the cancer had invaded every bone in her body. It was completely devastating. How could my baby’s body have this much cancer in it and how could we not know…mind numbing. Her next MIBG was after the 2nd round of chemo to see if she was responding to treatment. Watching that scan was just as terrifying as once again her whole skeleton lit up (but our doctor comforted us by pointing out that yes it was still everywhere, but not as intense as it was originally). Her last MIBG was after round 5 (in May) and as I watched and saw that there were still areas lighting up, my fear started coming back until I talked to our doc afterwards and he told me that there are areas that will light up that have nothing to do with NB. It turned out that all the areas I was concerned about wound up being the things that always light up, however there were still 3 areas of concern. NB showed up, very minimally but none the less still there, in her skull and the tops of each femur. The doctors were very pleased with the results but as parents we were very concerned (we had hoped and prayed that she would be going into her transplants with no evidence of disease like so many of the other kids that we have met here) but at least she would still be getting her 6th round of chemo plus the 2 high dose rounds during transplant so we have tried to stay optimistic. It is essential that this scan comes back clear of neuroblastoma (at least in our minds). Yes, she still has radiation to go though but I am scared that if after all this chemo it still remains we might never here the words No Evidence of Disease. Please, I beg of everyone reading this, to please pray like you have never prayed before that these scans come back totally clean (no question about it). She will still need to get another bone marrow biopsy (which also showed prior to transplant that there looked to be some NB activity in the marrow). She will be going down for her scan at 9:00am(Thurs morning) and it should take about 45 minutes. We need every prayer warrior out there on this one! Thank you so much and blessings to all, Amy Sunday, September 06, 2009 10:48 PM The Brookie Smile is comming back Thursday 9/3 Transplant Day +13: Happy 1st birthday to Bailey dog! Thanks so much Miss Liz and Dr. Dave for making Bailey’s birthday special! Brooke had a great day today. The morning started with a visit with Aunt Cheryl and a surprise visit from Rev. Patterson. Brooke was in a very happy mood and had so much fun with them both. Not long after they both left, then Grammy arrived followed by Uncle Bruce (who Brooke enjoyed playing hide-n-seek with) and last but not least Aunt Alisyn came to visit and helped get Brooke tucked in for the night. Brooke has been saying the sweetest prayers at night lately. She prays every night for Dr. Alvarado’s family, the kids she has met at CHOP and last night she prayed for God to take care of her Daddy. It was so touching…I just love when she prays from her heart and that with all she is going through that she is still thinking about others. Friday 9/4 Transplant Day +14: Still having some issues with nausea, vomiting & diarrhea. I hope that these things go away soon. It will be very difficult to get her to start eating and drinking while she’s still feeling like this. After Grammy arrived 2 radiation oncology residents and the attending (from HUP – Hospital of Univ of Penn) came to speak with me about Brooke’s radiation plans. At the moment the plan is for her to have radiation to her abdominal area (the right side where her initial tumor was) for 12 days. But because her last MIBG scans (done after chemo round 5) indicated that there were still small amounts of Neuroblastoma in her skull and both femurs they have decided to do another MIBG to see if the chemo from round 6 and the 2 transplants have “mopped up” what was left. So if they detect any NB anywhere than the radiation plan will likely change and more areas will be radiated and the number of days could increase. She couldn’t get scheduled for an MIBG until 9:00am Thurs (9/10) so we will be staying here until then. The plan is for her to start the radiation process on Mon 9/21. She is still not eating or drinking anything (they are taking her off IV nourishment Sat morning so hopefully she will start at least drinking soon). Tonight we got a wonderful surprise visit from Daddy! He came just as Grammy was leaving (around 6pm) and stayed until 10:00. We were both so excited to see him! Saturday 9/5 Transplant Day +15: Brooke needed a platelet transfusion this morning (19,000). She seemed to have a difficult time with this one and fell asleep as soon as it was done. Nana came while she was sleeping to give me break for a few hours. Once Brooke woke up she had a great time with Nana doing activities with all her stickers and playing the new Nintendo DS game that Nana brought her. Thank you everyone for all the cards, stickers and thoughtful gifts that have been sent to Brooke this admission. She has loved getting mail almost daily and it is such a nice pick-me-up when she is having rough days. New You Tube video: Brooke doing a dance (on 9/3) to a song written just for her by Songs of Love. Caution: watching this video (at the end) may cause dizziness! http://www.youtube.com/watch?v=w99spa5u9lc God Bless and please pray for her MIBG scans on Thurs to show No Evidence of Disease! Amy Sunday, September 06, 2009 02:39 AM Good Bye Kara Adams you will be sorely missed! Hello to everyone, many thanks for all the support and prayers everyone has blessed our family with. It is so wonderful to see Brooke starting to come back around. I also must say a blessing for Amy to be able to be there everyday and watch over Brooke and be able to keep everyone more informed with her updates. That has been a wonderful blessing for me to get a little more sleep and at the same time provide a new perspective on this journey that only a mother can do. For me; things have begun to catch up with me and I am struggling with work, hospital bills, keeping up with the house and finding time to visit. Then I just think of Brooke and go; how can I complain and I go about going ahead. It also helps to have everyone still everyday blessing our family and giving our family words of encouragement and lots of support. My main reason though tonight for writing is on a sad note and something that I am having a hard time with. I did go up to CHOP on a whim and surprise Amy and Brooke, but it was because I needed to see them like I never have before. I got home late Thursday night after work and did my usual by logging in to the computer and checking WBOC, WMDT and Salisbury News on line and after reading a posting on Salisbury News (sbynews.com) I was brought to my knees in prayer and tears. Beautiful young Kara Adams from Delmar lost her battle with the Beast! As you can imagine this hits home hard. Every day is just so important and in this battle you just can not assume anything or take anything for granted! As everyone goes into another day tomorrow please say a prayer for her family and just remember how precious life is. I just have no words to explain what I am feeling right now, except to know she is not suffering anymore and to pray for her family. Just remember Cancer does not discriminate and it is everybody’s job to help find the cures to fight this horrible disease. Kara you will be terribly missed by your family, friends, community, people you never knew and everybody’s life you ever touched. Also please have the community of Georgetown and the family and friends of Patrolman Chad Spicer in your thoughts and prayers tomorrow while you are in church. Thank you to all the people who protect us and fight for our freedom; you are truly thought of more than you know and are loved for what you do! Rob, Brooke’s Daddy! Thursday, September 03, 2009 09:06 AM Still on road to recovery Transplant Day +11 Tues 9/1: Brooke had a great day! Counts all look good (ANC 5254). Grammy made me go for a walk outside the hospital and enjoy the beautiful day so I took a stroll around Univ. of Penn’s campus (I even feel odd on a college campus with purple hair…as Rob told me: I need to walk down South Street to fit in)! Not much else to report today…no news is good news! Transplant Day +12 Wed 9/2: VERY rough night last night! Brooke woke up every hour, pretty much on the hour, from midnight until 8:00am when she was up for the day. She was either going to the bathroom or vomiting or a combination. She was vomiting a large amount of blood and having nose bleeds and it turned out her platelets were very low again (11,000) so she got a transfusion first thing this morning. She has needed platelets roughly every other day so far and she will not be able to go home until she can go at least 3 days without needing a transfusion. She also needs to start drinking a certain amount on her own (they are not concerned if she is eating, just want to make sure she doesn’t get dehydrated when we go home). Her mouth is starting to heal up and looks much better today. They took her off the PCA today and are now weaning her off the morphine (getting it every 4 hours). Her ANC today was a whopping 11,692 so they stopped her shots a day early (Brooke could not be happier about that)! Grammy wasn’t feeling 100% today on her way over here so she dropped off lunch outside the door and went home. Good friends of our family (really part of our family) Suzanne, Nicole & Mrs. Hoover came by to keep us company. Boy did Brooke have a great time! She was unhooked from her IV pole for a couple of hours while they were here and she ran all over the room playing all kinds of games. She kept asking me to go wait out in the hallway (so she could get away with things)!!! I know she’s feeling her old self when she’s kicking me to the curb! Here’s my last You Tube video of Brooke. I recorded it sometime between the 2 transplants: http://www.youtube.com/watch?v=9mEZnnPq5iQ God Bless, Amy Romans 15:13 (New International Version) 13May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Tuesday, September 01, 2009 01:19 AM BROOKE HAS TURNED THE CORNER! Sunday 8/30 Transplant Day +9: Brooke had a great day!!! Her ANC went from 20 to 192! She is still having Mucositis issues (vomiting & diarrhea) but starting to act more herself now. Grammy, Brooke and I had a wonderful day together and at night Brooke and I had great snuggle time. It is such a relief to see her attempt to smile and giggle and to just be Brooke. She never ceases to amaze me! I thank God every day for the miracle he blessed us with when he created Brooke. She is wise beyond her years, as most of the kids we have met here on the oncology unit are, such a gentle soul and her heart is filled with such joy and love. Monday 8/31 Transplant Day +10: Brooke’s day started a little rough this morning. She got to bed late Sunday night (didn’t fall asleep until about 12:30 & never napped) and had to wake up this morning to get on the scale at 8am. Needless to say she was not a happy camper and let it be known to anyone who came near her! She also started throwing up a lot of blood again and her nose was bleeding. She needed a platelet transfusion again. On a very positive note, her ANC took a huge jump to 1298 which means that she can stop taking all her oral antibiotics which is wonderful because she has been having the toughest time being able to keep them down. They taste terrible to her and it is hard for her to have anything in her mouth or to swallow due to the mucositis and if she throws them up she has to take them again! She was very happy about this news! The doctors think she may be able to go home early (this Friday at the earliest which would be about a week earlier than expected). I feel that it might be too early but we’ll see how she is doing the next couple of days. I had a wonderful visit with my college roomie, Steph this afternoon and Uncle Johnny and Aunt Johanna came by tonight to get Brooke all fired up right before bed! I have not seen Brooke laugh so hard in weeks and she just had a blast with them which was great to see! She finally settled down around 11:15 so I think it might be a rough morning again! Well thank you everyone again for all your prayers. It looks like the worst of this phase of treatment is over now! I am going to close with another video link of Brooke. This one is of her saying the Lord’s Prayer. I think I videoed this one back in March of this year. Hope you enjoy it! http://www.youtube.com/watch?v=ImhJNdF3chM God Bless, Brooke’s proud Mommy Sunday, August 30, 2009 08:19 AM The hardest part of this journey yet! Days +7 & +8 Post Transplant Friday 8/28 Day +7: The good news, Brooke has an ANC of 40 which means that her cells from the transplant are starting to engraft. The bad news, she spiked a fever of 101.8. They took blood cultures to make sure that it is not a line infection (in her central line) and as of 24 hours nothing has grown in the cultures (they also do a 48 hour culture so please pray that nothing grows). Brooke slept pretty much the entire day. She was only awake for about 10 minutes of Aunt Cheryl & Cassidy’s visit and didn’t even have the energy to play with Miss Sarah! I don’t think through the entire past 9 months that I have ever seen her feel so bad. Inside her mouth is awful looking (red & raw), she is just vomiting constantly, I think her entire body is hurting and she just doesn’t have an ounce of energy. I can’t even put into words how difficult it is to watch my baby going through all of this. Saturday 8/29 Day +8: This morning her counts indicated that she needed another platelet transfusion. She had a lot of blood in her vomit again and Grammy noticed purplish spots on her hands/wrists & top of her feet which the nurse & the resident both said was Petechiae and was caused by her low platelet count. Brooke seemed to be doing better for a couple hours in the early afternoon and even got out of bed and played on the mat on the floor. I had a wonderful visit with a great old friend, Linda. We walked across the street from the hospital to have lunch together and catch up. God Bless, Amy P.S. – I would like to wish Susan Smith the best of luck with the Ironman Triathalon she is competing in Sunday (8/30) in Louisville, KY. Susan had a purple Neuroblastoma ribbon airbrushed on her arm and has pictures of Brooke on her bike to motivate her to persevere through the pain & struggles of the race! Maybe when she crosses the finish line she can do Brooke’s Cancer Dance! Go get ‘em Susan our prayers are with you! Anyone who hasn’t seen it yet, click on the link below to see Brooke doing her Cancer Dance. It was videoed at Grammy’s house the night before she was admitted for her 1st Stem Cell Transplant: http://www.youtube.com/watch?v=8DpSSZC4rZE Saturday, August 29, 2009 01:43 AM The going is tough and whats ahead Day +6 from 2nd Stem Cell Transplant Wed 8/26 (Day +5): Brooke was put on a PCA (continuous morphine) but not sure how much this is helping. She pretty much slept the entire day. Not much else to report for this day. Thurs 8/27 (Day +6): Brooke woke up with the inside of her mouth bleeding and then was vomiting blood (both due to the Mucositis & her low platelet count (8,000). She got a platelet transfusion and immediately following a blood transfusion (7.9). Her ANC (Absolute Neutrophil Count) is back down to 0 (was 0.1 on 8/24 & 8/26). Rob came up in the morning for a meeting we had with Dr. Grupp at 11:30. I asked my brother, John, to come as well & Grammy to watch Brooke while we were in the meeting. Dr. Grupp is the Director of Stem Cell Biology & the Translational Research Program at CHOP. He is also the national Chair for Stem Cell Transplant. Dr. Grupp is world renown for his work with stem cell transplants and Neuroblastoma & we were so happy to be able to have a meeting with him. This, from what we’ve been told, is his first week back to work as he has been battling the beast himself having been diagnosed with Lymphoma. Here is this great clinician and researcher in the fight against pediatric cancers and now he is fighting for his life as well against the same disease he has dedicated his life to helping save others…please pray for him too. The meeting was to discuss her upcoming treatments/therapies (radiation, antibodies, accutane, etc…). We still have such a long way to go but with NB having such a high chance of relapse it is so important that we do everything we can now. Just prior to our meeting we had a wonderful surprise visit from Rev. Patterson! What a wonderful blessing he has been to our entire family and always seems to show up right when we need him! Thank you so much Rev. Patterson for once again making the trip up here to pray with us. The rest of the day was a pretty quiet one with Brooke once again sleeping quite a bit. She did have a short OT session with Ryan but wasn’t feeling up to doing much and Miss Sarah (child life) spent some time with Brooke updating her Beads of Courage (she is up to 10 ½ feet of beads!) That is A LOT of courage!!! God Bless, Amy 2 Corinthians 12:9 (King James Version) 9And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Wednesday, August 26, 2009 02:44 PM The tough part after Transplant Hi everyone. This morning is Day +5 from Transplant. Brooke has been having a rough couple of days since I wrote last. I’m going to try to get this done while she is still sleeping ( 9:45 am) and before the doctors come in to examine her. Monday 8/24: Started the morning with meds and mouthcare (never a pleasant experience but must be done 3x’s a day). Ryan, her OT, came in shortly afterwards. Brooke has enjoyed working with Ryan the past couple of weeks but initially Mon morning she needed a lot of encouragement to participate due to the pain and weakness in her legs (she has not wanted to get out of bed). But Ryan was able to get her motivated and out of bed and she wound up having a good session with him. Throughout the day her heart rate has been increased (around the 130’s) so they are keeping an eye on it. She continues to have, as a result of the Mucositis, vomiting, diarrhea and pain in her mouth and stomach. We Skyped (video call on the computer) with Daddy tonight which really made Brooke happy! Thanks Stacy for setting that up for us before we left! Tues 8/25: Miss Sarah (child life specialist & Brooke’s best buddy here) is back from being at the Ronald McDonald Camp for the past week (WooHoo)! Boy was Brooke happy to see her! She had OT with Ryan again in the morning and PT with Kat in the afternoon. She did pretty well and seemed to enjoy PT but needed a lot of rest breaks between exercises. She is getting morphine pretty much every 4 hours, while she is awake, to help with pain in her legs and from the Mucositis. Her platelet count was only 9,000 so she had a platelet transfusion first thing in the morning. Her heart rate Tues was running around the 150’s. The Team (Attending, Fellow & NP) just came in. In spite of how Brooke seems to be doing to me, they continue to be very pleased with how well she is doing. All of the issues that she is having are to be expected and she is actually doing much better than most kids at this point of transplant. She actually has a WBC (white blood cell count) today – only 0.1 but it’s a start. Her Hemoglobin count this morning is 8.5 so they said she will probably have a blood transfusion tonight or tomorrow. Her platelet count is 25,000 so she will probably get a platelet transfusion Thursday morning. For all you blood and platelet donors out there thank you so much from the bottom of my heart! Brooke has needed probably well over 20 transfusions since she was diagnosed. You really are saving lives and truly heroes! They are going to put her on a PCA (Patient Controlled Analgesic) or as I call it a morphine pain pump (low dose continuous morphine with the ability to give her an instant extra hit of it when needed) today and they think this will be a big help. Well, it’s now 10:35am and Brooke is starting to wake up (my free time is officially over). Now go hug your kids and tell them how much you love them and praise God for all your blessings! God Bless, Amy "I will bless the Lord at all times; His praise shall continually be in my mouth....The angel of the Lord encamps all around those who fear Him and delivers them" (Psalm 34:1,7). Monday, August 24, 2009 01:37 AM A update from Mommy It is day +2 from Transplant and Brooke is doing well. Most of her issues at this point are related to the Mucositis (mouth pain, vomiting & diarrhea). I have noticed today that she is becoming weaker and is having difficulty standing up without assistance. I’ve requested a tub seat for her daily showers and I am hoping that she will be getting PT & OT 3X/week to work on her strength and endurance (last transplant she only had PT & OT 1X/week). Saturday Brooke enjoyed a visit from Nana and they played for hours together while I got to do laundry & eat and Sunday Aunt Jenn drove here from Fairfax, VA to spend some time playing with Brooke and to give me a break (again I did laundry & ate)! If you are wondering why I am doing laundry every day it’s the only way that she can have her blankie and stuffed animal while in transplant (they have to be washed daily). There is NO way she could go without them for 1 month. Her other 2 stuffed animals have to remain in a Ziploc bag on her bed until we go home. Well that’s about all to report at this time. I want to thank Becky & Mrs. Clarke for their visit tonight as well (and for bringing me dinner)! As always thank you so much for your prayers and messages of encouragement. God Bless, Amy Saturday, August 22, 2009 05:45 PM A update from my Stem Cell Transplant Hi everyone, it’s Amy again. Ok so here is my 4th attempt since last night to post an update! Everything went well with the transplant yesterday. Brooke cried while Dr. Teachey was “pushing” the stem cells through her “tubies” but stopped crying as soon as the staff pulled out a gift for her! Brooke started feeling a little better yesterday afternoon and had fun playing with her new transplant day gifts (toys, stickers & stamps) with Grammy and enjoyed spending the day with Daddy. This morning she is resting quietly and watching Playhouse Disney. She is about to get a platelet transfusion because her counts were only 14,000 (a healthy child should have a count around 150,000 - 450,000). Dr. Horwitz was just in and is pleased with how she is doing. Thank you all so much for your prayers…please keep them coming she still has a long way to go. Friday, August 21, 2009 12:59 AM Going thru my 8th round of Chemo Hello everyone it’s Amy (Brooke’s mommy) filling in for Rob. Just wanted to give you a recap on what has been happening over the past week. Thurs 8/13: Admitted to CHOP and in isolation preparing for 2nd Stem Cell Transplant. We were thrilled that she gained all her weight back (was back to her starting weight in January of 30.5lbs) and grew almost ½”. Brooke had a fun easy day and was happy to see her nurses, doctors and of course Miss Sarah! Started on IV fluids in the evening. On a sad note I found out that afternoon that my Uncle Paul lost his battle with cancer that morning across the street at Univ of Penn (HUP). I know Brooke has another angel in heaven watching over her now. So happy I got to see him at Alisyn & Nino’s wedding just a few weeks ago. Friday 8/14: Started chemo first thing in the morning. This chemo round she is getting high dose Melphalan, Etopophos & Carboplatin. Going into transplant Brooke has already had significant hearing loss due to the Cisplatin that she received during rounds 3 & 5 and is expected to have additional hearing loss after transplant from the Carboplatin she is getting this round and will most likely require hearing aids. We have already witnessed what the power of prayer can do by the improvement with her kidneys. To fill you in on that: We were told back in June in our meeting with the Transplant Team that her kidneys were only functioning at 70% going into the 1st Transplant and that was permanent damage (it would either stay at 70% or get worse). After the 1st Transplant they did a GFR (Kidney) test to she if they were still functioning at a high enough level to qualify for the 2nd Transplant and the results were a miraculous 100% functioning-No kidney damage at all! So please pray for no additional hearing loss. Anyway, Friday she had a great day and had more energy than either of us could keep up with! Sat 8/15: Rob left Friday night to go help his family move his Grandmother from her home in NJ to an apartment in DE Sat morning so that she can be closer to Rob’s mom and then he headed back to Salisbury the next morning. Sat was another great day for Brooke! She was feeling great, still eating and had endless energy! Sun 8/16: Brooke started feeling the effects of the chemo. She stopped eating at this point, the vomiting started and her energy took a major hit. The Mucositits (painful inflammation & ulceration of the mucous membranes in her mouth & digestive tract) is on it’s way back. Almost every transplant child is put on a morphine pain pump for this but Brooke was able to tolerate it last transplant and never needed/wanted any pain medicine at all for this last time even though you could tell it hurt just by looking at her. Please pray that the pain from the Mucositis is tolerable for her once again for this transplant. Her spirits were lifted later in the evening by a visit from Uncle Johnny & Aunt Johanna and she made 2 paper chains (Uncle Johnny’s idea) to count the days when Miss Sarah will be back to work (she is gone all week helping at the Ronald McDonald Camp) and the days until Transplant! Mon 8/17: Brooke still had nausea & vomiting and pain from the Mucositis. Even though she was not feeling well and very tired she was still very happy to see Aunt Cheryl and cousins Brian & Cassidy. Brian left the next day to go back to college at JMU so Brooke was very happy to see him before he left. Tues 8/18: Brooke’s chemo ended (hopefully forever) around 8:30 in the morning! She is vomiting a lot, Mucositis getting worse and has started with diarrhea now. She had a bright spot in her day when Aunt Marlene stopped by with Cousin Missy & Mark and brought a big 25 Qt. bin filled with stickers that their friends from all over the country gathered up for her. Apparently a 4 year old girl can never have enough stickers! Thanks to everyone who helped to fill the box! Wed 8/19: Probably Brooke’s most difficult day so far. Vomiting & diarrhea non-stop, her heart rate was too high which they thought was probably due to her hemoglobin being low (8.1) so they gave her a blood transfusion, and later that night she developed a very itchy rash again (she had an allergic reaction to cephapine (antibiotic) during the 1st transplant and had a horrible rash that drove her crazy for about a week). She is on Nubane now every 3hrs round the clock to help with the itching. Rob came up to visit that afternoon and stayed until about 9pm. Thurs. 8/20: Today is a very special day…it’s my Mom’s (Grammy) birthday! She chose to come to CHOP and spend the day with us like she has done everyday this week and almost everyday since Brooke was diagnosed on Jan 5th! She is the greatest mom I could ever ask for and I don’t know how I would be getting through all this without her. She is the strongest & kindest woman I have ever known and has always been an amazing example of unconditional love, and sacrifice for her family. I have always said that if I can be half the mom to my kids someday that she has been for me then I’ll know I’m doing a great job…I hope that I am making her proud now. I love you MOM!!!! I could go on forever but back to the events of the day! As most of you know for last transplant Brooke had a request that I dye my hair pink for the big day (which we wound up doing the temporary spray on color) this time Brooke wanted me to dye it purple so Johanna & John came today and Uncle Johnny entertained Brooke while Johanna bleached my hair out and then dyed it purple! Brooke wasn’t too sure about it at first but loves it now! Brooke had a better day today. Vomiting a little less, rash is getting much better and really didn’t bother her too much all day, heart rate is normal, and diarrhea is getting better. The Mucositis seems to be getting worse but she still won’t take anything for it. She is one tough cookie that Super Girl! Well tomorrow is a big day so I need to try to get some sleep- her transplant is scheduled for 1:00pm so please say lots of prayers! Thanks so much to everyone for all your prayers and support. God Bless, Amy Wednesday, August 12, 2009 01:30 AM Getting ready to Leave for Transplant #2 Hey everybody me Brookie here just to say I am leaving for CHOP in the AM. I sure do appreciate all the good food everyone has made for me and Mommy. I also want to thank everyone for keeping me in their thoughts and prayers. I have had a really good week since I last checked in with you all. I have played really hard with all my toys and made lots of cards for everybody at my new table in our sunroom. I have taken lots of walks with Mommy and Bailey Dog and had a few more play dates with Riley and Morgan from next door. Today was a special treat, I got to see Ms Tara’s new baby. I could not get too close but she was so cute! Boy, do I miss Greyson and all my friends for that matter. I am sad to go back to CHOP, but I know it is what I must do to beat this Cancer. Over the last few days Mommy and Daddy have done some special things for me. First on Saturday, when Daddy came home from work so Mommy could go out with some friends that night he came in with a box and two sleeping bags. It was a tent and told me we were going to be camping out, oh boy was I excited. I told Mommy I wanted to do that and Daddy got the idea from Mommy I think, but I was excited to get the tent up and put all my stuffed animals in the tent. I was helping best I could to get the tent up and thank goodness Ms Robyn was here cleaning to help Daddy, because it might have taken a lot longer. We got everything all set up and I moved in. Daddy then made me a special dinner from one of Mommies’ recipe books that I wanted and it was really good, not as good as Chef Joel’s stuff he makes me at Market Street but Daddy will do in a pinch. After a bath Daddy then had another surprise, he made me smores! They were really good, but a little too messy for me, so I just ate some marshmallows. Then it was off to camp and Daddy read me some stories in the tent with just a flashlight. It was so special me and Daddy camping. I did wake up about 6:30AM and wanted to go see Mommy, which was ok with Daddy because I think Daddy’s back was hurting. Then on Monday we all did something really special. At 9AM Mommy started making popcorn and we got in the car and met Daddy in front of Regal Cinema and they arranged with Mr Seth who manages Regal Cinema to have a theater all to ourselves so I could see Ice Age! How cool was that? Although about half way thru I did get scared from the big dinosaurs and we had to leave, I wish I could have had my friend Gabe with me; he loves dinosaurs and he might have been able to calm me down. I did get to see a movie in the theater this summer and go camping! Then later that night I coaxed Mommy into camping, so I got to have 2 nights of camping! Then Mommies back was sore! Well, I should get some sleep so I am ready for another round of Chemo and the 2nd Transplant and close to another month at CHOP! I just want to say a very special Thank You to Mr Seth and Regal Cinemas for allowing me to have the opportunity to see a movie this summer! It was really nice being home for these few weeks, it does make it that much harder going back though. As you can tell Brooke has been doing really well. We are praying really hard that things can continue to go as planned and this well, but we know not to get ahead of ourselves and take each day as it comes. As we pray for Brooke we would ask that you keep in your prayers as well some local friends of ours battling the Beast; Chris Palmer and his family, Sandy Fitzgerald-Angello and her family, Tracy Gibb III and his family, and a very special prayer to Dr. Alvarado’s family. Dr. Alvarado was very special to us and to Brooke as he was to everyone whose lives he touched! Tuesday, August 04, 2009 10:25 PM Getting settled in at home Hi everybody Brookie here. It has been quite some time. A lot has been going on in our family’s lives and sometimes Daddy forgets that a lot of people would like to know what is going on. Since I have arrived home; lets say July 15th because on the 14th I was only home an hour and 20 minutes before we all were back in the ER I have been getting stronger everyday and lately have been eating just about everything in site. I have just been in such joy being at home and playing with all my toys, sleeping in Mommy and Daddy’s bed and spending time with Bailey Dog. I think often of LuLu and Rocky and get very sad. I think our house is very beautefuul where all the repairs were done from the water damage. I especially love my new play area out in our sunroom. Ms Liz, Ms Robyn and Ms Jen really had a great idea in that design and Mommy got me a new table and shelf’s to keep things better organized that really topped the whole thing off. I just go all day long playing with my board games, toys, arts and crafts, stickers, playing Wii, my DS game and everything that I missed so badly while I was in the hospital. I also know that I want to get in as much fun as possible because I will soon be going back for my 8th round of Chemo and my 2nd Stem Cell Transplant which will require anywhere from another 25 to 35 days of isolation. Grammy and Nana have each visited me to give Mommy a little break. Pop Pop and Mom Mom Mulford also paid me a quick visit and I made them play board games the whole time they were there. Mommy tries to get me outside once a day for a walk with Bailey and some fresh air. I have had a couple outside play dates with Morgan and Riley from next door. It is hard because I can not really go anywhere and contact is limited because of my low immune system, but I am as happy as ever with whatever I get to do. I love my time I get to see my Daddy which is very little but he tries to come home on the weekends and give Mommy a little break so she can get out of the house and attend church on Sundays. I love it because I try to get over on him. I told him that Mommy said, “It would be a good idea if I had ice cream for dinner”. I think I pushed it a little to much because even Daddy did not fall for that. I go back to CHOP the 13th of August and in the meantime I will keep eating to get stronger and continue to fight this Cancer. I am not looking forward to going, but I fully understand it is what I must do to get better. To all my friends out there thank you so much for all the letters, cards, stickers and gifts you have sent me. Please know that I miss you all terribly and would give every single thing back and everything I own just to be playing with you at the beach, soccer field, a pool, your house or at my house. Boy I was really hoping this summer I was going to be tall enough to get on that roller coaster at Sesame Place, well they better look out next year because I will be! All the things I have done over my 4 years with you all I remember very vividly and they are very special and dear to my heart in there own special ways. On a closing note it is so very nice not to be running to CHOP and getting ouchies and people poking and probing me. I still have that dressing change every 5 to 7 days that just gets me worked up on my tender skin, but Dr Dave and Ms Liz do a good job at keeping the pain to a minimum. Goodbye for now, Brookie! Well, there you have it straight from the horse’s mouth; Brooke is doing amazing and just continues to get a little stronger each day. This time at home is truly wonderful for her recovery and getting her strength back for the next Transplant. I truly wish I could be there more, but I also count my blessings everyday that I have been able to be there when it truly matters and Amy is allowed to be with Brooke all the time. Time gets away from me so fast and sorry for going so long between updates. When Brooke goes back to the hospital this time Amy will be doing postings as well to keep everyone better informed, because who knows what I will encounter. I would at this time again like to Thank everyone who was involved in the process of putting our house back together. There was just so many people that all went above and beyond on those 16 days! To save time I think Liz Walker summed it up pretty good: Dear Bob: I wanted to thank your team lead by Randy for all the incredible hard work that was performed in such a short time. To get a house ready to welcome back a beautiful child who had just underwent her 7th round of chemo and a stem cell transplant combined with a loss of her immune memory is daunting, and to do it all in less than 3 weeks is mind boggling, but that is exactly what Royal Plus was able to accomplished and for that I will always be grateful to the wonderful team that made it all possible. The finishing touch was the sign that Randy dropped by to welcome home Brooke. I thought you might be interested to see the following picture. Many thanks, Liz Walker Also many thanks to Liz and Dr Dave, Dave Laubauch, John Busby and the boys, Greg Herling, Mike Schneider, Keepsake Framing, Impact Audio, the crew at E.D. Supply, Jet Carpet, Dan Gregory and his crew, Advanced Chimney, Critter Getters, Michael’s, anybody else that Liz might have pushed along, my Sister and Brother In Law and of course everyone at Royal Plus for pulling this all off! Once at home, so many thanks to our wonderful community for all the support and things you have done to touch our family. Special thanks to Chris Dorman for arranging meals that were provided by: our neighbors in Kensington Woods, Trinity United Methodist Church members and friends and families. Amy and Brooke got to eat well balanced meals at a normal time and I always had something to eat between midnight and 2AM. We are all truly blessed in ways that you can never imagine in a time of unforeseen events. May the Lord be with you all and keep you and your loved ones safe, be with the ones fighting the fight and be with the ones who have lost someone to the fight. Rob Sunday, July 19, 2009 01:52 AM Brooke is home from Transplant #1 The Mulford’s are back and Brooke is HOME! Brooke arrived home to Salisbury Tuesday night July 14th around 8PM after being at CHOP for 26 days. Of course we were only home for around an hour and 20 minutes before we were back in the ER at PRMC. Brooke was sitting at the kitchen table eating a snack before bed and slipped out of the chair and landed directly on her head. Since she had low platelet counts we had to go right to the ER. She had a very big bump and had to have a CT scan and blood work done. This was to make sure of no internal bleeding or a fracture. We arrived back at home around 3:30AM. Everything came out negative and after being already drained we would try to get some sleep and Thank God that she was ok and that she could come home. I must apologize to everyone for no updates for such a long time, but with Mulford good fortunes there was a mishap right before Brooke’s Transplant. I came home Wednesday night before I was to leave early Thursday morning June 25th the day before Brooke’s Transplant to find our living room ceiling laying on the floor. Our HVAC unit’s drip pan in the attic had overflowed, the same unit that was installed the end of January of this year. Mind you that Brooke was due to come home in a couple of weeks to a sterile house, let alone now one that had to have a lot of work done to it and totally cleaned. After leaving late Thursday night and making it on time to Transplant and spending a couple of days I came come and spent the next 16 days working on the house most nights till 2 or 3AM. There was no time to sit down in front of a computer. All the while not telling Amy what had happened so she would not worry and take care of the most important job of all, taking care of Brooke. I think this about sums up the past few weeks. There are many people to thank on this matter, but I will do another entry for that. The most important thing is that Brooke was not at home on the couch when this occurred and it happened at a time when there was still time to fix things. The most thankful of all Brooke is again home with us. During this stay Brooke received her 7th Round of Chemo for 6 days and her Stem Cell Transplant. She then had another 14 days of recovery which were very rough. She basically had zero counts across the board, was on an IV protein diet and developed Mucositis. Mucositis is very painful and causes severe mouth sores and sores inside the digestive track and causes a lot of mucus and blood to be thrown up. Brooke also developed a severe rash to one of the medications she was taking and wanted to scratch herself raw. It took awhile to narrow down what she was allergic to. For the most part Brooke did well and the doctors are happy. We have to take many precautions between now and the next Transplant which Brooke will have to be back at CHOP on August 13th to basically do the same thing again. The only thing different will be the Chemo drugs she receives for the 8th round, they will be even stronger than the Chemo drugs she received this time. Then there will be strict precautions all the way to next April. It will take Brooke’s immune system a very long time to recover. Along the way she will also receive Radiation Treatment and Antibody treatments. We will be very scared every time we have to leave the house, especially for our once a week trips to CHOP. This will especially be nerve racking during the Winter months with cold and flu season. For those of you who do not know by killing off her bone marrow and having it re-grow itself with the new Stem Cells all the vaccinations she had are now nil and void. That is why outside contact is so strict and almost prohibited with other children and absolutely no contact with any children under 3 years of age. There is so much to still go over, but it is again late and I need to be up early to return to Salisbury from Amy’s Moms house in New Jersey. I will thru the course of the week enter entries to give results of tests and things that transpired during her 26 days. There is a big Fund Raiser at Market Street tomorrow for Chuck Campbell to help with a Double Lung Transplant. So many people have been there for Brooke and our family and life still goes on and if Market Street Inn can help people; then that is what I now feel why God has blessed us with the success of Market Street. I always said, “I wanted a restaurant that was deeply rooted in the community that I was a part of.” Before I wanted a restaurant now I want that restaurant to help! We all truly believe that the prayers and support from everyone in the world has been just as important as any procedures or medicines Brooke has received in her course of treatment. You have to have hope, believe in miracles and trust your faith in order to concur the most obscure things thrown at you in the path we call life. With all of that combined and the power of prayer anything is truly possible. Brooke has come a long way and there still is a long way to go, so take nothing for granted and continue to pray for her as hard as you ever have. PS. Brooke would like to say Congratulations to her Aunt Alisyn and her new Uncle Anthony “Nino” on their Wedding Day and is so happy Mommy could be there to be a part of it! Thursday, June 25, 2009 03:26 AM 7 Rounds of Chemo Done! Good morning everyone it’s me Brookie. I do not have a lot of energy and it has been a very long few days of feeling very yucky. Friday morning can not get here fast enough. I really do not feel like talking, because it hurts Brookie very badly at this point. I am just going to let Daddy bring you all up to speed, ok? I miss all my friends and my Bailey Dog very much, I am praying I can come home very soon but I know I still have awhile to go. I do know that Team Brooke is out there giving it’s all and that makes Brookie feel very good. I love you all and will be back feeling better very soon! Brooke Hi everyone, God Bless you all for the Love and Support you are providing Brooke with right now. I will fill you in what has been going on since Sunday the 21st: On Father’s Day Brooke opened a toy she is allowed to have in her room and she was happy about that. She presented Daddy with a very special card and pencil and pen holder with a picture of the two of us from our last vacation. Brooke also gave me a Wii game called Order Up where you start off in a fast food joint and work your way up to a 4 or 5 star restaurant. Makes me tired just thinking about it. After this Brooke made Father’s Day cards for her Pop Pop Mulford and a very special card for her Great Grandpa Ivins. I went to visit each of them shortly after this and the one card was very special because it brought so much happiness to Great Grandpa Ivins. This was so important because he passed away early Tuesday morning. Brooke’s day also got tough later Sunday afternoon, it was day 3 of Chemo and she started the drug Cyclophosphamide and almost immediately started throwing up. She was still playful, but had to take breaks to get sick. She also now had to start going potty every 2 hours around the clock. (God bless Amy) She got her last dose of Thiotepa but still needs a shower every 4 hours until 6PM Monday. That afternoon Uncle Johnny, Aunt Johanna and Grammy came to visit and brighten her spirits. Later that evening as things were not bad enough Brooke started hallucinating around 10:30PM and it lasted until around 2AM. This was very scary for Amy as she was by her side watching. Monday the 22nd: In the Am Brooke was playful and enjoyed watching a movie, but as the day went on she did not have much energy. She was not puking as much as Sunday. Eating at this point was pretty much out of the question. At least the showers every 4 hours were over. That was a lot of showers since Friday. The peeing is still going strong every 2 hours. Tuesday the 23rd: This is where the road started getting very hard. Brooke had to receive a blood transfusion because counts were dropping. She also had an OT (Occupational Therapy) session, but had little energy to participate. She slept most of the afternoon. Then Brooke had an allergic reaction to something and she broke out in a rash. They do not know if it was from the blood transfusion or a Chemo drug. Then after this Brooke came down with a fever which is very scary at this juncture. Poor Amy on pins and needles for hours. The fever finally broke around midnight and every one could sleep for 2 hours until time to pee again. Wednesday the 24th: This was a very hard day for Brooke and all involved. She was vomiting quite a bit and already has Mucosities. This is expected but not till around 4 days after Transplant. This is where she develops sores in her mouth, throat and digestive tract. She started receiving morphine for the pain. She also still has the rash. Reverend Patterson stopped in to bring an uplifting to Amy and Brooke as only he can do. He knows just when to visit! Brooke showed some life and smiles when Aunt Cheryl, Cousin Brian, Cousin Cassidy and Grammy came to take turns watching and giving Amy a break. Chemo is now over, 7 rounds! Thursday will be a day of rest and recovery to get ready for Friday’s Transplant. Well that is where Brooke stands at this moment. Please keep the prayers coming as we head into the big day. Brooke is very weak, very sick and all counts are very low. Everything is critical at this point. Please ask in your prayers to continue the Lord to give Amy this amazing strength to be the rock that Brooke draws her strength from. I will be heading up later tomorrow and thru the weekend and on Monday attend the funeral for my Grandfather for if it was not for this man I would not be the person I am today or ever been able to attend college nor my sister. He lived a good life and was 86 and was able to be at home and not suffer, if we all could be so lucky! Rob Sunday, June 21, 2009 12:56 AM Day 2 of Chemo Hi everybody this is just a quick informative update. I posted a few new pictures; I will try doing a couple every few days. Amy gave me some discs of pictures and there is a lot on them over the past few weeks so you can see what Brooke was up to when there were no updates. Brooke’s Spa Day was done on June 11th and she had her friend Ashley go with her. They had a mani/pedi done. Thank you so much to About Faces and to Brooke for making Brooke fell so special. Of course along the way in life we have road bumps and Brooke is no exception. On Friday the 12th we had to put Brooke’s kitty LuLu to sleep. She had been sick for a little while and we were trying to keep her going until Brooke left for Transplant, but it was not to be. Brooke is very smart and has quite a grasp on medical things. Amy felt it was best to tell her the whole truth and not try to hide or lie about anything. In the end that was a smart decision because Brooke knew LuLu was sick and was not feeling well. She handled it very well and will never have to wonder what became of LuLu. As a matter of fact she told LuLu to find Rocky in Heaven. (Rocky was Brooke’s doggie that past away this past fall, the first time we really ever heard Brooke laugh really hard was because of Rocky) Hey, Brookie here! What happens when a cat eats yarn? It has mittens What dog is always on time? A watch dog Knock Knock Who’s there? Muffin Muffin Who? Baking a cake (Amy and I have no idea, but boy does she love it) I have to go my favorite show is on right now, ABC’s WIPE OUT. Opps, second favorite show. I have to be up every morning at 8AM to watch Disney’s Special Agent Oso! Daddy always misses it, silly Daddy. Today was day 2 of Chemo treatments as we head to next Friday the 26th for the Transplant. Brooke was still feeling pretty good today. She was full of energy and very playful. Her appetite is still good, she ate a good dinner but at breakfast when her omelet arrived the smell made her feel a little sick. Her ANC count has already started dropping so everyone going into the room must wear a mask except Mommy. So far she is handling getting a shower every 4 hours fairly well. For the first 3 days one of the Chemo drugs secrets thru the skin and she has to get a shower every 4 hours, they do allow once a day to get it on the sixth hour at night time so Brooke and Amy can get a little sleep. The hardest part is that everything has to be washed and her favorite blankie has to be away from her for 4 hours. Grammy came by today and she got to open one of her special presents we had to get ahead of time for this trip. It was a playmobile ambulance to match her hospital she got. On this stay Brooke can have no stuffed animals or things with hair on it. Everything has to be sterilized once a day and she has to eat from a very limited menu. Miss Sara came by today as well and that always brings a big smile to Brooke’s face. Miss Sara has her work cut out for her on this stay with all the restrictions. That is about it for today, everyone getting settled in for the next 30 days. Many Many Thank you’s to everyone out there who have prayed so much to get me this far, please keep me in your prayers. This time because of the extended stay and not changing rooms if anyone would like to send a card with words of encouragement and hi, Brookie and Mommy would love it. You can always include stickers, they are allowed and I can make cards with stickers on them all day long. I can not have a lot of things so it’s just not a good idea to send them to me at CHOP unless they are cleared thru Mommy. Daddy messes up a lot and would not like to get in trouble. Here is my room number: 3C12 The Children’s Hospital of Philadelphia 34th Street and Civic Center Boulevard Philadelphia, PA 19104-4399 ATTN: Brooke Mulford FLOOR & ROOM: 3rd Floor Central, Room 12 Friday, June 19, 2009 11:54 PM The Long Lost Brookie Heelllooo everybody!!! It’s me Brookie the super hyper party girl. It has been a really long time since I have had time to sit still with Daddy and go over all my activities. I have been having play dates, Tea Cup parties, kids Mani/Pedi, Outside Movies, lots of walks, dancing and been an eating machine! Just last night I was the guest of honor at a pizza party at Grammy’s house. I just ran around and danced for hours. I went to bed at 11PM last night; I was just feeling so good and didn’t want it to end. I have a new dance I have come up with; it’s called my Cancer Dance. I started by dancing naked in front of the mirror, because I am so silly! I shake my hips and wiggle my butt and turn around and around and then I pull the Cancer out of me and stomp on it and I then blow a big kiss and kiss it away forever. I follow it up by saying Cancer Fears Me! Before we left I also got to open all my cards and things people have presented to me along my journey the first 6 months. I am so grateful to everyone for keeping my spirits high and being by my side. At times there was so much stuff it was overwhelming and Mommy and Daddy wanted me to appreciate each card, letter, gifts, handmade items and just everything to keep me going on some days. I also had an afternoon at Market Street where both our local news stations were there and Mommy and Daddy spoke to everyone to tell them where we have been in this process and where we are now going. I was also presented with a check from Madison Taylor who sold a lot of doggie treats, Jenny Palmer and Cathy Marshall from the Beat the Beast team did the formal presentation of the check for my Neuroblastoma Research Fund. We also stated that over the past 6 months from the love and support from our local community, our communities where we used to live in NJ and all over the world from donations and fund raisers that between my Brooke Mulford United Way Account, my Gift Medical Account and my Neuroblastoma Research Fund around a $100,000.00 has been raised. This is so wonderful to help my family as we fight this cancer for at least another year with the Transplant procedures and then Antibody treatments, but at the same time raising money to help with research to fight Cancer that will benefit other people. Daddy has also been able to use Market Street to help many people so far as we are more aware of what truly is important in this world. We all are in Philly right now at CHOP getting ready to begin the process for the Transplant. I am hooked up to fluids and waiting for my room that I will be spending the next 30 days in. I will be getting Chemo for the next 6 days, a day of recovery and then next Friday will be the day of Transplant. I then will be here for the next 3 to 4 weeks to recover. I then will come home for 6 weeks and if all tests are ok I will come back and do the process again. The clinical study I am in radominized me and I am eligible for 2 transplants. I will then have to stay at home until around next April as I recover and my body is able to fight off infection. I will then at some point begin Antibody treatments. I still have a very long road ahead of me, but I also have come a really long way. Well Daddy needs to get this posted so everyone knows what is going on with me. Over the next couple of days Daddy will be speaking to you, posting medical procedures and road maps, pictures, and what I have exactly done over the last 3 weeks and talking to you as well. I will also be chiming in to keep you all straight, you all know by now sometimes Daddy gets sidetracked. For now everybody, Brookie is back to fight this Cancer and BEAT THIS CANCER!!! Tuesday, June 02, 2009 01:37 AM A basketful of Webkinz and that long awaited BBQ Hey everybody Brookie here! It has been awhile since I have talked to everyone. My counts came up really quickly from Thursday to Saturday and as a matter of fact Mommy called Daddy at the Children Capture the Cure Event to pick us up to go home. I was so excited to get out of the hospital. I was really looking forward to the chance of maybe having a cookout Sunday. Daddy left the event a little early to come get us and around 7PM Saturday night we were leaving CHOP and headed home. On the way Mommy called Aunt Kelly and Miss Liz to line up the BBQ and hopefully the weather would cooperate. We got home around 10PM and I was so happy to sleep in Mommy’s bed. Before I went to bed though I had to tell Daddy a couple jokes. (What do you call a sleeping bull? A Bulldozer & the second joke: What do you call a mouse after a bath? Squeaky Clean) I was just so silly and happy to be home. I was really excited because Daddy and Mommy told me they had a special present for me tomorrow. I woke up and was ready to see my present. I went downstairs and Daddy brought in this big basket all wrapped up. I looked and my face was all smiles, it was a basket full of Webkinz and Webkinz clothes! I was in heaven and could not open everything fast enough! The basket was a silent auction item from the Children Capture the Cure Event and was given to Daddy to give to me, now Mommy and I have a lot of codes to put in the computer for my Webkinz on line site. By this time I was really hungry so Daddy made me some Mickey Mouse pancakes. I probably would have ate more, but I had to get back to the room full of Webkinz. I played for awhile but then I was starting to get excited about the party. Miss Liz, Dr. Dave, Aunt Kelly, Uncle George, Ashley and baby Alyxandrea were coming over. Once Ashley got here I could not play with everything fast enough. I took Ashley for a ride in my jeep. We blew bubbles, rode other toys and played in the back yard. I was just so happy to be playing. After dinner and eating steak of course, I had to get an ouchie, but it went ok because their were some cookies waiting for me. It was then time for bed. Monday morning I had to go to PRMC to have a blood draw to check on my counts. My platelets are low so we will be leaving first thing Wednesday morning to go to CHOP to have a platelet transfusion and then stay at Grammy’s so we can be at CHOP first thing Thursday morning for my bone marrow biopsy. On the positive side my ANC count was up so no more ouchies for a little while. Well that has been what I have been up to the last couple of days. After my bone marrow biopsy I am looking forward to few good days at home and doing lots of activities before my transplant. I will be at CHOP in isolation for around 30 days. I do not think I am looking forward to this! Well for now I am not going to think about it, I am going to focus on all the fun I will be having for a few days after the biopsy. Good night everybody! Thank you to everyone who helped and came out to the Children Capture the Cure Event. It sounds like this can become a big yearly event and raise lots of money to Beat the Beast! Well it has been a busy couple of weeks and schedules have been hectic. Brooke has been doing a remarkable job of keeping her spirits high and rebounding quickly. The next month is going to be a long month, not that it hasn’t been a long marathon since January but tiredness has definitely started to catch up with Amy and me. Hopefully the Lord can give us that extra boost of energy to carry us thru the transplant and focus on all the extra care Brooke will need while her immune system fights to come back up to acceptable levels. Well I need to sign off, because I have a super long day tomorrow to try and get everything done so we can leave first thing Wednesday morning. I originally was going to work till noon on Wednesday, so now everything will have to be done by late Tuesday night. I would like to extend my gratitude to everyone who was a part of the Children Capture the Cure Event. There was a lot of hard work that went into that event and it was a great day. A special thank you to Chad Mason and the Cyclone Riders, Russell Newberry from Time Bandit of the hit series Deadliest Catch, Dany Walter for the wonderful photos and helping Brooke and to a special girl Lauri Horton who worked for me at MSI and put everyone in touch with everyone to let Brooke be a part of this. It was great seeing you and meeting your very special family! Saturday, May 30, 2009 01:10 AM Whats been going on Just wow! What a week for everyone. Wanted to let everyone know what is going on. After arriving at CHOP in the wee hours of Tuesday morning Brooke and Mommy got a little sleep. On Tuesday Brooke had to receive platelets and another blood transfusion. Her counts were super low to have a blood transfusion 2 days in a row. At least Tuesday night Brooke got to play hospital bingo, where she won two games. Brooke was very happy to see Grammy on Tuesday and Wednesday as well. Wednesday Brooke started feeling a little better and ate a little. Of course she was pumped up for Wednesday night to watch the show Wipeout. She has been talking about this for months. Amy has had to keep her satisfied with taped shows from last year. After that it was time for bed, because Thursday morning was a very big test, a full body MIBG Scan. First thing Thursday morning Brooke was wheeled off for the scan. Brooke did amazing again. She sat perfectly still and did not move. Afterward she told Mommy that she had a very bad itch on her nose for about 10 minutes and did not scratch it. Everyone was just so amazed. Amy the tech who did the scan, told Brooke she was very pleased to meet her and had been following her story everyday, isn’t that so cool? As the day went on Brooke got to see Grammy, Uncle Johnny, Aunt Johanna and Daddy. Later that day a doctor came in and gave the results of the scan and Dr. Weiser would be in later to elaborate more. Talk about pure torture to Dr. Weiser arrived. The results of the scan were as follows: Everything was clear except 3 areas. At the top of both femurs and in the skull were very slight traces of Neuroblastoma uptake residual cells. To put things in perspective on a scale of 1 to 100 When Brooke arrived at CHOP she was 99 and currently she is 1. Dr. Weiser stated the Team is very happy, because sometimes the Chemo does not work and all signs point to that Brooke is responding and her course of treatment is still on track. These 3 spots are not tumors and are very slight. They are so small that radiation is not even required before proceeding. Of course Amy and I just wanted to here no traces all clear! As Brooke’s counts continue to come up she will have other tests this weekend. Those tests consist of some cat scans. Brooke is scheduled to have another Bone Marrow Biopsy next Thursday. That along with the MIBG really confirms where Brooke is in the treatments. She is still on tract for the transplant in a couple weeks. Today Brooke really made a big jump on her counts and was running all over the room according to Amy. Hopefully she will be able to come home Sunday. Well that is where we are right now. I need to sign off, because I need to get up at 5:30AM and be in Medford NJ tomorrow for Children Capture the Cure Event. First there is a motorcycle ride for Brooke put on by the Cyclone Riders MC, NJ Chapter with around 200 riders and I hear the secret celebrity is the host and speaker for the show Deadliest Catch. How cool, but need to be in Burlington NJ by 9:30AM. Then its off to the main event, The Children Capture the Cure Event which will feature the Little Miss Rose Pageant. This event takes place from 10AM to 5 PM at the Indian Acres Tree Farm in Medford NJ. There is 75 contestants signed up for the pageant and they are expecting around 600 people. The event is to benefit the American Cancer Society and The Brooke Mulford Foundation. This is going to be some kind of event! Well another late night, another early morning and a very long day. Hopefully after the event I can slip up to CHOP and say hi to the celebrity of the day and Mommy. Then get some sleep and bring everyone home! Rob Monday, May 25, 2009 11:47 PM Memorial Day in the ER at PRMC Just wanted to post a quick update. Since Brook arrived home last Tuesday afternoon she has had an amazing 4 and a half days. She has been eating and having lots of fun with Mommy. Daddy even had a great day with Brooke on Saturday. She has been to the beach and been on a lot of wagon rides while walking Bailey Dog. She has rode her new used Barbie Jeep many times and blown lots of bubbles as Bailey tries to pop them. Today however things were not too good. It kind of started yesterday. Brooke's mouth became really sore and she could not eat. This morning she had a fever and a lot of pain. We knew from round 4 that this could happen again. Amy got all her things together and was on the phone with CHOP. We took Brooke to the ER at PRMC around 2PM. Brooke and Amy just now left for CHOP. After having Brooke's blood drawn and the results came back it was the lowest her counts have ever been. She needed a blood transfusion and platelets. They started a couple antibotics and the blood right away. The platelets would have to wait until CHOP because PRMC does not have radiated platelets. This time CHOP sent their own Ambulance and team down because of the blood transfusion and the counts being so low! One bonus their Ambulance has a TV and DVD player. Brooke is really bummed out this time. She just wants to go home so bad. Today Aunt Kelly and Uncle George were comming over for a small cookout and she was so excited for this. What can you say the girl is like her Daddy she loves parties! She was just crushed! We were due to go to CHOP on Wednesday and Thursday for a lot of tests in preparation for the Transplant. The big one was another Bone Marrow Biopsy. This will set things back. I will do an update tomorrow once Amy and Brooke are settled in to know more how she is doing. Thank you so much Dr. Forrestal for taking such good care of Brooke in the ER today. Thank you also for calling Miss Shannon(Dr. Forrestal's wife) and having her stop by with Riley, that at least brought a smile to Brooke's face. I would also like to send a big thank you to Jackie Gast for bringing over a turkey dinner this week. That meal supplied 3 dinners a couple lunches and a couple midnight dinners for me this week. We really stretched that one out. Now that Mothers Day and SU graduation is over hopefully I can be around a little more. Again Thank You to everyone out their pulling and praying for Brooke! Wednesday, May 20, 2009 01:44 AM Back home after round 6 Sorry everyone it has been a few days. Brooke arrived home today around 4PM after the 6th round of Chemo. I drove up yesterday to pick up Brooke and Amy and as we were getting ready to leave around 6PM they decided that Brooke needed a blood transfusion. Well that is about a 3 hour procedure once the blood arrives. At 9PM the blood still had not arrived so we would not be going home. I on the other hand had to be at work the next morning. I left CHOP and drove to my grandparent’s house in South Jersey to switch cars with my Mom so she could pick Amy and Brooke up the next day. Then drove to the bridge and finally to Salisbury arriving around 1:30AM, what a day. To bring everyone up to speed here has what has been going on since Friday. The Bone Marrow biopsy that was done while Brooke had surgery came back and the Doctors were very pleased, but there are still traces and they will have to do another before they can proceed with the transplant. They also preformed another audio logical test and there is more hearing loss. They also performed a kidney test, an EKG and an Echo test? Not too sure I got the last one right, but I am tired and the point is they performed a lot of tests on Brooke. Amy had a very difficult few days being up there and having to hear all these results, mostly positive but not everything we wanted to hear as parents. Brooke was very sick on Saturday and Sunday. She was in good spirits and on Monday was very talkative and happy. She was very mad that she had to stay another day though. Tuesday she was fine on the ride home and actually once home played outside. She took a ride in her new jeep, played wiffle ball and drew on the driveway with chalk. Then it was time for that ouchie after Chemo, no fun. For dinner she told Mommy she wanted steak from Market Street. She ate a lot of the steak which is great! While Brooke was up there over the weekend she had a few visitors. Of course Grammy was there everyday and on Saturday Pop Pop and Mom Mom Mulford came to see her. On Sunday this was a special visit, Aunt Cheryl and Cousin Cassidy came. It is always special when they come for a visit but this time was really special. See Cassidy has been involved with a project at Cherokee High School. The program is called SMACK (Students Movement Against Cancer) and they collected a couple hundred DVD’s for me to donate in my honor to Child Life at CHOP for all sick kids to watch while they are here. Thank you so much to all the people at Cherokee for helping us all at Chop. They also donated some to another hospital as well. See those high school kids know how to get things done! On Monday Uncle Josh came to visit from NY as he is headed to Medford to study for his boards, Uncle Josh is going to be a Dr. I probably know more than him at this point. On Tuesday I got to see Nana and drive home to Salisbury with her and Mommy. Well as you can see it was a very up and down few days. Lots of test on Brooke was very draining but the visits seemed to be the right medicine to lift everyone’s spirits. All the prayers out there continue to be a guiding voice in Brooke’s course of treatment. The marathon goes on and we pray that the next few days go well for Brooke, unlike after round 4. The next couple of weeks while Brooke’s counts come back up we will prepare ourselves for many tests again. This is just so hard to see your child have to do all these tests over and over again. She is a trooper and still manages to give us that smile, all I can continue to think about is that someone said to me a while back is, “You have an Angel and you are truly walking with God and witnessing the hand of God heal Brooke. All these people are behind you and supportive because you are witnessing first hand this blessing and they want to be part of this, an Angel being touched by the hand of God.” SG I think about this all day long everyday! Friday, May 15, 2009 02:16 AM A great week leading up to round 6 Hi everybody its Brookie and boy have I been revved up and just being silly. It’s almost been a week since I have talked to you but I have been super busy! Since last Saturday I have been recovering from my surgery nicely and doing lots of fun things with Mommy. By not having to have my Chemo last week I have really taken advantage of feeling good. On SATURDAY I gave Mommy her Mothers Day present early, a message after a hard few days in the hospital. Miss Julie came over with her table and surprised Mommy and Mommy was very happy. Miss Liz came over and she played with me while Mommy relaxed. SUNDAY was a very special Mothers Day for me and Mommy; 1st it was great to be home and feeling good and then we went to the beach for the afternoon. We collected seashells, had a picnic, read books, and put our feet in the ocean. Later when we got home I got my second wagon ride for the day. This was a very special day between Mommy and Me! MONDAY I went to school at Asbury and enjoyed seeing everyone. Later in the afternoon Mommy got a call from Dr. Weiser about my bone marrow biopsy saying that the results were not ready yet, because they sent them out of the hospital for the results. We should know by the end of the week. TUESDAY Mommy got to play golf and I got to play with Nana. Tuesday afternoon was not much fun, we had to take my kitty LuLu to the Vet, she is really sick and it might be her kidneys again. Dr. McAllister did everything he could do and we will have to see what happens. Later in the day we went to Miss Liz’s house to play and I found out about my new favorite food, Pop Tarts! WEDNESDAY I got to go on a school trip to the Salisbury Zoo and I got to ride on a school bus for the 1st time! I was cracking up and loved looking out the window, no car seat. I loved being at the Zoo with Christopher and his dog BO, he got all the animals fired up and what a show we got. (Please remember this Saturday is Courageous Christophers 2nd Annual 5K Run, Walk & Stroller Strut to raise funds for the Everybody Playspace at Pinehurst Elementary School to benefit disabled children and to continue to raise awareness about Dravet Syndrome and Epilepsy. For more information please go to www.CourageousChristopher.com) The day did have to end with a dressing change, but Dr. Dave has gotten really good at it, I like to still scream for the principal of the matter. Thursday we loaded up the car and headed to CHOP for round 6. It was great getting to spend time with Daddy, he has been working a lot due to Mothers Day and all the graduations coming up. Just to let you know how good I am feeling by the time I got to CHOP I ate, a bagelful, a hoagie and some pretzels. We got to CHOP in good shape and went to clinic first and waited for the blood work. Guess what, my ANC count came back just a tad low and the study I am in it has to be just right. I will have to go back tomorrow. Boy did this work out for me! We went and got pizza and I ate this huge slice with pineapple on it. By having this set back what is a little girl to do? I went to my Aunt Johanna’s salon and got pampered! I got a few hairs trimmed, my nails painted, my toes painted (Thanks Kim) and my few hairs dried under the dryer! Then it was off to Grammy’s to stay the night, she will have to take Mommy and me in the morning because Daddy has to be back in Salisbury to be at work the next couple of days. While I was there I got to see my Uncle Bruce and cousin Brian who was home from college. What a day and week I have had. I am ready to start this round 6 and get it over with! Well I better get to bed, good night and I will talk to you all soon. Brookie Well as you all can see, Brooke has had a great few days! Sometimes these set backs might be God interacting to give Brooke that extra strength and give her time to be a little girl and let her know why she is fighting this fight! It was great Brooke could be home for Mothers Day and Amy and she could spend it together while she was feeling good. We should find out about the bone marrow biopsy this weekend. For now lets hope round 6 goes well and the after effects are not as bad as they were in round 4. Thank you all for the prayers and support! Rob Saturday, May 09, 2009 02:15 PM Recovering from surgery Just a quick update. We are all at home now. Two days of a roller coaster ride. We were discharged from CHOP around 8:30PM last night. We arrived home around 11:45PM. We were all extremely tired. When I left to go to work this morning everyone was still asleep. We are home until Thursday the 14th. We will take Brooke to clinic and then she will be admitted for round 6. In the meantime Brooke should have a few enjoyable days at home while she heals from surgery. At least she is not healing from surgery and recovering from Chemo at the same time. Brooke will be able to do some things before she goes back. Everyone have a great weekend and will keep everyone up to date as we get closer to the next round! Friday, May 08, 2009 12:38 AM A day in a wagon Hi everybody, Brookie here! I know Daddy has been keeping you up to date this week, while I have been recuperating. I thought we were going home today, but my Doctor decided that I should stay another day to make sure everything is ok. They told me no Chemo this time; I have to come back next week so my platelet count comes up. So, next week I will come for my weekly clinic visit and then stay for the 6th and final round. It is a good thing I stayed because I was so sore today and had to get pain medicine 2 times! I had a very fun morning, I opened a very special present from my class at SCS. It was a handmade Fairy outfit, I will be just like a Disney Character. Then my Aunt Jen came and I got a new WordWorld video and some new Pet Shop Pets. Thanks Brad and Ally! Later in the day I went to a Special Nurses Oscar presentation for Nurses Week! I really did not want to go, but I needed to get up and get moving around. I tried my best, but I had to get a wagon to bring me back to the room. I then proceeded to stay in the wagon for 5 ½ hours. I made a home out of it! The medicine then helped and Mommy was able to get me out of the wagon and back into bed! While I was in the wagon I did eat very well today and started to drink a little more as the day went on. Grammy played with me a lot while I was in the wagon, maybe that’s why I did not want to get out. Something really special also happened today! Mommy presented CHOP with a check for $10,000.00 to open the “Brooke Mulford Research Fund for Neuroblastoma at CHOP.” This is something very special to our family, because without all the research done at CHOP I might not be receiving the care I am receiving. I think real soon Daddy will get a link on my website to show how you can contribute to this if you would like to help me and all kids to fight this horrible Cancer! I got a real treat tonight, my favorite show Wipeout Mommy let me watch on the computer. This is a challenge reality show from last summer, I JUST LOVE IT! I love when they wipeout on the big balls. I am such a silly kid! I just feel like I am living in this hospital! I miss home and Bailey and all my friends so much! Well it is bedtime so I am going to bed and hopefully I start walking around tomorrow and can come home for a few days. Thank you for all those prayers the last few days! Well everybody, another day and Brooke is doing well. She really needs to start walking tomorrow. She should have been walking a little bit today, but she did eat well and started drinking while going to the bathroom a little more regularly. Tomorrow we will have to push that. Amy and I really pushed for staying today, we just felt a 3 hour ride in the car seat strapped in would be a little to much. If we lived 30 minutes away, then it would be another thing. If something was to go wrong it is just too far away. So hopefully tomorrow we can be discharged early and arrive in Salisbury at a decent time. Of course now we are waiting on the results of the biopsy test to see where we stand, this is very nerve racking in its own right. We will have the weekend to get some weight on Brooke and really have her in good shape and spirits for round 6. Also, this will give Amy the chance to be home for Mothers Day. (I better get on the ball) Everyone have a great night and a better tomorrow. If tomorrow you look like you are going to have a bad day or something does not seem fair; step back take a breath and think of Brooke. Give a quirky smile and resume what you are doing and remember it is not that bad and go on. Rob PS. The first donation for the fund that was started today in Brooke’s name was made possible by the “Beat the Beast” cookie sale held back in February. This was a Relay for Life event and this year they decided to give some of the proceeds to help Brooke. After careful considerations this money was originally raised to help with Cancer Research and with the check the Palmer’s presented to Brooke for $6,000.00 we all felt that this is something WE ALL truly hold close to our hearts, knocking out all Cancer. This is how the “Brooke Mulford Research Fund for Neuroblastoma at CHOP” was started. The formal presentation from the Palmers to Brooke did not happen yet, because of some unexpected set backs in Brooke’s counts not being high enough to be out in public. We have to raise $25,000.00 total by the end of the year to make this account finalized, but we feel by selling T Shirts and bracelets we can make it happen! To everyone who participated in the cookie sale and to the Palmer’s, Thank You for something we hold dear in our hearts: the research that CHOP and all the COG Hospitals have done has given our little girl a much greater chance to live a normal life! Thursday, May 07, 2009 12:22 AM Final update of the day Hi everyone! To close out the day here is an update and where we stand. It has been a very long day. I actually just got back from getting something to eat. I was not hungry all night until I left the hospital. As you know the surgery went very well and we will not know the results from the bone marrow biopsy for around 48 hours. We did not have to go to surgery recovery; we went right to the third floor where we usually go when we go to CHOP which is the Oncology floor. That was a big surprise and a big help, we would not have to change rooms after a day or two. Brooke got her big surprise from Mommy and Daddy; which was a Playmobil hospital. This was a major project for Mommy; it took about 4 hours to assemble. It is an amazing toy that has all the things in it that Brooke has experienced and knows how all the procedures are supposed to go. Brooke happened to see a corner of the box in the car yesterday and she knew about it so it was not a total surprise. Guess what Brooke said as soon as she woke up from surgery? Where’s my present, her eyes were not even open! Can not get anything past Brooke! The whole morning happened so fast, Brooke was in her room by 12 Noon and we thought we would not be in a room by 3PM at the earliest. Nana and Grammy were there to help out. Brooke was very sore all day and did not move much. She had 4 incisions for the surgery and two incisions for the bone marrow biopsy and also a IV put in her hand. Brooke hates that and hid her hand all day. Well, as we all know with this marathon nothing goes as planned. I walked out of the room for about 20 minutes and came back to a whole new itinerary. Amy said it looks like we might go home tomorrow. Brooke’s platelets are still low and her Doctors would like to see them come up on there own. This means that we would come back next Wednesday on her regular scheduled clinic visit and be admitted after that for round 6. What a shocker to Amy and I. That’s just the roller coaster ride we are on. The main thing is the surgery went great and all doctors are happy and not concerned with waiting a bit for round 6. It gives Brooke a chance to come home and build up some strength and put some weight on. As the night went on Brooke had some major discomfort and had not gone to the bathroom all day. Her surgeon stated that she might not go home tomorrow but we will have to wait and see. Amy and I prefer her to stay at least one more day to make sure there are no complications from the surgery. Brooke did eat a little bit later on in the night and drank a little bit. We will just have to wait and see. As I stated; what a day that started at 4:45AM. Amy called and Brooke went to the bathroom around 10PM, and boy did she go! Good news there. Well that is where we stand now, lets see what happens tomorrow! For now thanks for keeping up with us and for all the prayers and support from everyone! I am going to bed and hopefully Amy and Brooke are fast asleep! Wednesday, May 06, 2009 09:30 AM Surgery update Just a real quick update. The Dr. came out and just said, "The surgery went better than expected and he saw nothing else!" Just the best news ever! Right now they are performing the Bone Marrow Biopsy that will tell what percentage is left or not left in her bone marrow. Again God is listening to all those Prayers! Will keep you all posted! Tuesday, May 05, 2009 11:27 PM Quick update before surgery I Just wanted to send a quick update and a couple new pictures to everyone out there. We all arrived at CHOP today around 12 Noon for Brooke to have blood work and for all her vital signs. Everything looks good for tomorrow and she got her weight back up to 28 Lbs. She will have to have a platelet transfusion before surgery. We have to arrive at CHOP by 6:15AM, which means we will all have to up around 4:45AM. We are staying at Amy’s Mom’s house tonight because Brooke was not admitted today, we just had to come up for Pre Op stuff. When you look at the pictures you will see Brooke had a wonderful few days. She had a play date on Sunday with Tara from her Asbury class. Monday Brooke went to class at Asbury and had a wonderful time and all the kids were so happy to see her and that made Brooke feel so good. After Asbury she went with Amy, Miss Liz and Bailey Dog to see all the puppies that Bailey’s Mom had again. Shelly wanted to let everyone know there is still a couple available. Today she had a great day playing with Grammy and seeing her cousin Cassidy tonight. Also today, it has been awhile but Brooke was telling jokes. Brooke is such a strong little girl for all she has gone thru up to this point. Amy did just come downstairs a little while ago with a tear in her eye. Before Brooke went to bed she cried to her Mommy that she is scared. She has been holding back but now she is very scared about her Surgery and Bone Marrow Biopsy tomorrow. Amy calmed her down and she is asleep now. We just want everyone out there to know how much all of your support and prayers mean to us. Everyone’s comments over the last few days with words of encouragement for this surgery and the last round of Chemo, Round 6 have really lifted all our spirits and we have read them all to Brooke. Amy wanted to also Thank Everyone and especially everyone in our neighborhood who has provided dinners the last few weeks. They have been a huge help to her as I have not been home a lot! Also, a very big Thank You to Chris Dorman who keeps all the meals straight and lining up people to provide them. I never knew how important having prepared meals is for people who are dealing with major illness’s. In closing, please say an extra prayer and I will keep everyone up to date. Saturday, May 02, 2009 01:40 PM Home for a few days Hi everyone it’s Brookie and I am home! I got home last night around 6PM. I have been playing ever since. I did see Miss Liz and Dr. Dave last night, I am still getting my daily ouchie thru Sunday, very long time this round. I guess it was ok, because afterwards they gave me a Curious George sticker set that I can use over and over again. After all this it was time for bed. Guess what? I slept thru the night and no pain! Mommy also got to sleep in her own bed! I woke up around 7AM and Mommy gave me my medicine and Daddy then watched me for the rest of the morning while Mommy went back to bed. Daddy and I watched some TV and played with a lot of toys. In between I managed to eat a breakfast bar, some cereal, a doughnut Daddy surprised me with and a few hours later Daddy made me some Mickey pancakes with butter and syrup and I ate them all! Daddy sure did learn a lot from Grandpa Greg! Then it was back to playing. Nana came bye to bring Bailey Dog back and so Mommy could take care of some stuff and go see the eye doctor because her eye is bothering her. I am looking forward to few good days at home. Too bad with this crazy weather, Mommy wanted to take me to the beach for some ocean air and to get some seashells, I promised some nurses at CHOP I would bring them some. I think Mommy has some special things planned for me though! I get a little break because I do not have to go to CHOP on Monday for Pre-Op. They moved it to Tuesday and the surgery on Wednesday. One extra day home is great! Mommy, Daddy and I will be leaving early Tuesday morning to go to CHOP and then stay at Grammy’s Tuesday night. Wednesday we will head to CHOP for the surgery and then a few days of recovery and then start round 6! MY LAST ROUND OF CHEMO!!!! It could be a stay of around 9 to 12 days. The last 30 days I sure have been in the hospital a lot. Well I need to go so I can eat some more and concentrate on playing. I need to pack on some pounds by Wednesday so I have a lot of strength for surgery and round 6. Brookie PS. I hope everyone has fun scrapbooking and attending Paddy Murphy today Monday, April 27, 2009 12:32 AM Quick Update Hello everyone this is a quick update on Brooke. It was a very long night for everyone, but especially Brooke and Amy. After the ambulance made a couple wrong turns by the time Brooke and Amy were settled in it was 6:30AM. Then at 7AM the Doctors started making rounds. Brooke managed to get some sleep, but Amy never went to bed. Brooke’s fever finally broke around 3PM today. She is on a couple antibiotics and more than likely will need a platelet transfusion tomorrow. The Doctors told Amy that Brooke will be there for around 4 to 5 days. Hopefully Brooke can feel better fast and get home soon. Amy and I feel it is so important for Brooke to be able to do things that are normal before she goes into a Chemo round and this next round will be surgery first and then the Chemo. To do everyday normal things is to keep her spirits high on why she is fighting this cancer so hard. Just such a turn of events so fast, when we were all looking forward to a great week ahead for Brooke to have some fun. For now that is all I know and when more information becomes available I will pass it on to you. Sunday, April 26, 2009 03:31 AM Unexpected trip to CHOP Hello everyone Brookie here checking in. Daddy has been working really hard this week and was coming home tonight to do an update because he made it thru Salisbury Festival, Professionals Week and The Poodle Club of America. He was so excited, because I was a having a really good couple of days. Before he could make it home, Mommy called Daddy and told him we were headed to the hospital. I was running a low grade fever early in the night, but before bed it hit a 102 and that is an automatic trip to the ER. It is 1:30AM and I am waiting on the ambulance to take Mommy and me to CHOP. This really has taken everyone off guard because like I said I was having a great few days. Since I last spoke to you all I was still getting very sick, but doing a lot better this time compared to round 3. That is because they let me have an IV with fluids at home and a 24 hour anti nausea medicine called Zofran. This made things a lot better and by Tuesday I did not get sick that day. Nana came on Monday to stay a few days and help out and we kept busy. On Wednesday Nana, Mommy and me went to clinic, because Daddy was working. This was a very long day! I did have a blast at CHOP, I was running around taking pictures of everyone and just having a lot of fun. We left about 8AM and did not get home until around 11PM. I needed to get platelets and a blood transfusion. Everyone was so very tired! We did get some good news, because I was doing good I can have a blood draw on Monday and if the counts come back ok then we do not have to go to clinic next Wednesday. That would mean about 12 good days home before my surgery and round 6. Thursday I felt good and had a good day. Nana went home, but Grammy came to play with me, ok to help out. Friday I had a great day playing with Grammy, going for a wagon ride and eating very well. I started off by having one of those chocolate doughnuts Daddy buys for me once in awhile, pancakes, lunch and for dinner some salmon and chicken. Saturday I just did not feel quite right from the get go. I was tired as soon as I woke up and did not eat much. I played with Bailey Dog a little bit and then Lisa Mertensotto talked to Mommy and she had a big surprise for me. She gave me a used Barbie motorized jeep that even plays music. I was driving it in the yard and Bailey Dog did not know what to make of that. Then only about 20 minutes into it I went inside and laid down on the couch. Mommy knew something was not right then. I was warm, but Mommy thought that might be from the outside. Then Miss Tonia came over for my ouchie and dressing change. Miss Liz and Dr. Dave are away. I was very tired and did not put up much of a fight. Then I did not eat much dinner. That’s when Mommy started taking my temperature and it just got higher and higher and brings me to where I am now. Back at PRMC again waiting to go to CHOP in an ambulance. They are supposed to arrive about 2AM and we should all be settled by about 5:30AM. I hope I get some sleep tomorrow. I was looking so forward to some real nice days at home going out in this nice weather. As we all know by now we can not get ahead of ourselves and take each day, day by day! Well that has been my week, there is some neat pictures that Daddy will get up on Sunday after this is posted. I just want to thank you all for all those prayers and everyone out there fighting and raising awareness about cancer for not only me but for everyone. I just want to say a special prayer to Kara Adams, Ishia “Bud” Elliott, and Trace Theofiles. I heard there is a special girl out there named Madison Taylor that has been making Doggie Treats and then selling them all by herself in order to raise money to help me, I can not wait to meet her! Well everyone, tonight’s update was supposed to be an update about how well Brooke was doing and how looking forward we were to spending an extended few great days at home before the surgery and next round. Also, maybe with getting away not going to a weekly clinic visit. That was definitely not the case and this really caught us off guard. Hopefully this is nothing serious and she can come home Monday. Brooke was doing really well and we were all so happy, and I was looking forward to doing the update tonight. I still have some great pictures from the past week that Amy took and I will get them up tomorrow at some point. Brooke has really been thru a lot and she is still giving it all that little body of hers can give. All in all it was still better than round 3 and hopefully this is just a little setback. This may just be Gods way of keeping us all on our toes as we get ready for the surgery and the Stem Cell Transplant. Please keep Brooke in your prayers and thoughts and remember to stop and look around and be grateful for all you have in this world and take nothing for granted, especially the people you hold dearest to your heart! Rob Saturday, April 18, 2009 02:04 AM Home from CHOP after Round 5 At long last it is me Brookie checking in with you all. Daddy came and picked me and Mommy up today and we are home in Salisbury. Round 5 of Chemo is behind us, just have to get thru the after effects the next few days. Monday after Easter we went to CHOP as you know and started round 5. This is a quick summary of my week. Monday night I was up a lot having to change sheets and diapers because of all the fluids I must take with this round. By Tuesday morning I was getting sick and very tired. Today I also had to get a CT scan to see how the Chemo was working on my tumor. In order to get the scan I had to drink this stuff and because of all the fluids I could not. So I had to have a G Tube or feeding tube feed thru my nose, this was no fun! I was so worn out after today and so was Mommy and Grammy, it was a long day for everybody. On Wednesday I was feeling a little better but still getting sick and not eating much. Mommy and I got a huge boost of spiritual uplifting when Reverend Patterson paid us a surprise visit. This especially gave Mommy a much needed lift. Thank you so much Reverend Patterson for giving my Mommy that extra boost of energy. A little later in the day Mommy got a surprise visit from Bill and Suzanne Hoover, friends from New Jersey. Grammy was here today as well. I also had some energy when I got my Easter baskets from Grammy and Aunt Johanna and Uncle Johnny. I got some stuff Mommy was not to happy with. I did have some smiles when Sara from Child Life helped me paint a couple piggy banks and do a scavenger hunt. By Thursday we were into the routine of getting sick, not eating much and not getting much sleep because of all the fluids round the clock. It was a long day and night for everyone. Grammy was here most of the day trying to give Mommy a break. Friday was here and I finished getting my fluids and Mommy packed up the room and Daddy loaded it into the van. We left the hospital around 2:30 PM and got to our house around 6PM. I was tired, but it was soon time for an ouchie. I really really did not want that today. Something different this time before going to bed I have a Wall-E pole at my house so I can get fluids for a few days at home to try to avoid another trip in an ambulance to CHOP, because of dehydration. Hopefully with all the precautions this time these few days go a little easier than round 3. Mommy should be a nurse by now with all the procedures she has to do for me. Well I think Daddy wants to say a few things and I am very tired. Just bless you all for all the prayers and thoughts you have been saying for me, God is hearing them all and guiding my fight against this cancer. I am going to BEAT THIS CANCER!!! Sorry for not updating this week. With the weather turning it is a lot of work at Market Street trying to get the outside ready to go. I also made a comment that some people were confused on “The poodles are coming”. Next week the Poodle Club of America is in town and it is there big event of the year. People are in Salisbury from all over the world with there poodles and they all like to sit outside with there poodles. This is very busy for us and with the economy the way it is, this is a much welcomed event. If anyone is looking for something to do and you would like to see the most beautiful poodles in the world, take a trip to Salisbury and check it out! Also next week is professional’s day and that is crazy for us. Then we go right into Salisbury Festival which is a big festival in downtown Salisbury. Hopefully that clears some things up on what is going on also in my life and delaying updates. To update everyone; here is some things going on and will be going on with Brooke. After the CT Scan they said, “the tumor has not shrunk any more, but that is ok, because Brooke’s Doctors have decided to remove her adrenaline gland that the tumor is on.” This way they are sure to get the entire tumor, because it is in a tricky place to try to remove it. What this means is when Brooke was scheduled to begin round 6 she will instead have surgery on that day. We will go to CHOP on Monday May 4th for Pre Op stuff and then go back on Wednesday May 6th for the surgery. She will then have 3 to 4 days of recovery and then start Round 6. This will be between a 9 to 12 day hospital stay. We also do not know the extent of the amount of hearing loss that will occur from one of the Chemo drugs. Also after this we hope to have some more definite answers on when the Stem Cell Transplant will occur. This will be about a 30 day hospital stay. I think that brings everyone up to speed. We have come a long way, but we still have a long way to go. I can not express enough to everyone out there the gratitude that Amy and I and our family as well can Thank You All for the Support, Thoughts, Prayers, Fundraisers and Concern that has blessed our family. Please know that it has made this difficult situation such a better situation and a manageable way to care for Brooke. Along this journey it has changed and touched many lives, and because of everyone out there our family will be doing many things in the future to help others who may be less fortunate, raise awareness and establish funds to battle this terrible thing that no family, individual or especially a young child should have to go thru. For now our main focus is to do what’s best for Brooke and do all we can to help her BEAT THIS CANCER! I can tell you this; she is already working on her invitations for her Birthday Party in November! Rob Wednesday, April 08, 2009 10:10 PM Back from CHOP, no Chemo today Hi everybody, just a quick update to keep everybody informed. I am home in Salisbury Maryland. We all took a day trip to CHOP and came home. We all love driving up and back in one day. When we go for a Chemo round we first go to clinic so they can draw blood and do blood work and do a bunch of other procedures. Well when the blood work came back my platelet count was too low. Other counts were all great, meaning at least my body is reproducing white and red blood cells. The doctors just want to be sure that my body is reproducing platelets correctly as well. See everything has to be just right before you can start another round of Chemo. The Doctors did not seem real concerned because so far I have been on tract for everything. I will go to the PRMC Cancer Center Friday morning to have blood drawn and she what my counts are. Depending on what my platelet count is will determine if I go back to CHOP on Monday or next Wednesday. For now I am looking forward to having a few good days and being home. I am looking forward to being with Mommy, Daddy, LuLu and of course Bailey Dog. I also now get to spend Easter at home. I hope the Easter Bunny can find me now, Mommy said, “the Easter Bunny knows you will be at CHOP honey.” So the Easter Bunny thinks I am at CHOP, oh no. Well the main thing is I am doing ok and I am at home with my family. Anyway it has been a long day in the car and I am heading off to bed. I just wanted to fill you all in. Brookie Wednesday, April 08, 2009 02:13 AM Getting Ready for Round 5 Well everybody I just wanted to give you an update before I head off to CHOP tomorrow for round 5. I have had a real busy last 3 days. I am not as full of pep or eating like I usually am before I head into another round, but I got to do a lot, have lots of smiles and take fond memories with me. Sunday I got to go with Daddy, Mommy and Nana to Pemberton Park to do an Easter Egg Hunt. I also got to dye an egg, color a picture and race with an egg. I got to see lots of my friends and be outside. I did have to wear a mask and my neck got a little sunburn, but I did not care I got to be out. I did get very tired towards the end. When I got home, I got to see Dr Dave and Miss Liz. I was so happy to see them that I did not even really complain about my dressing change. They brought me the neatest thing, it was a little people hospital girl complete with an IV pole and other things and I knew what all the things did. Then I got to have steak from Market Street. Daddy brought dinner home for us all. I just love Miss Flo’s Mac n Cheese! It was then off to bed. Monday was just as busy. I headed off to Asbury with Mommy. I had such a fun time, we did another Easter Egg Hunt. I found 6 Eggs. I got to make an Easter Bunny craft and be with all my friends. Then I was presented with something very special. I was given a handmade quilt and pillow case with all the kids handprints on the quilt made by Carmen Geisir (Gabe’s Oma) and Jackie Rider. Now my friends can always be with me no matter where I go. Then I got a real treat, Mommy and me stopped bye Salisbury Christian School. I have not been there since I have been sick. There is just a lot more people there then Asbury and a lot more ways to pick up germs. However today I got to stop bye and I see my teachers Mrs. Waddell and Miss Teresa and some of my friends. I also was presented from Sheila Campbell a gift from SCS Aftercare and a letter from the Easter Bunny. I then came home and later in the day watched the movie Bolt with Nana. What a day I had, I just had so many smiles and great memories to take with me. Tuesday I had a relaxing morning with Nana, because Mommy got to go out to Ladies golf for the first day at Green Hill. She must have been really cold but I think she was happy to get out for awhile. She had to rush back because Nana and Pop Pop Vince were going to the Phillies game. Later on a nurse came to the house to meet with Mommy and go over my Wall-E machine I will have at home when I get back this time. Hopefully I will not get as sick this time, because I can get this medicine at my own home to help me after this really hard Chemo drug. Then it was time to go to Tuesday Night Soccer. I had so much fun! I was all smiles! Then I got to go and have pizza with my friends and we also got a special dessert. It was a Canolli that we all shared. Then it was time to say our goodbyes and head home for bed so I could go to sleep and Mommy could get everything ready for tomorrow. I just also want to send a big Thank You out there to everyone who attended and put on Brooke-Mulford-Palooza at the Monkey Barrel Friday night and to everyone who attended and put on The Best Cheese Steak in OC by Radio 98. I just Love You All and it gives me even more good vibes and positive energy heading into round 5. Brookie All I can say is Brooke has had many smiles the last few days. Be sure to look at all the new pictures posted from the last few days. Amy and I just feel it is so important to have these few days with her friends so it can be as normal as possible. It reinforces and gives the strength to Brooke to fight the fight. Soon enough she can be back at it everyday with her friends and be whatever she wants to be. While she has not been as strong and eating as well as in the past heading into a new round of Chemo, she did get to do the things she likes to do and her spirit is just as strong. So again we put our Little Girl in the hands of her Team of Doctors and Nurses, The Lord Almighty and all the prayers that everyone has said and will say. I must say so far it is all working more than any of us could have ever asked for! Please continue with us and Brooke on this Marathon that we are continuing to pace ourselves on. The finish line is no where in sight yet, but we are well into it and our Little Super Girl is giving it all she’s got and to boot a smile most of the time that we have all come to love. Again, many thanks to everyone out there doing there part to help Brooke and us and at the same time raise awareness of this horrible disease. Rob PS. Please say a prayer and support for Kara Adams, Trace Theofiles and Isaiah “BUD” Elliott. They are local children battling the Beast as well. PSS. Also say a prayer and give your support to Jesse Baier an employee of AppleBees and fellow Hospitality industry member who was diagnosed with a Brain Tumor on March 27th. If you have a chance stop bye AppleBees this Saturday morning, they are having a $5 pancake breakfast to raise emergency funds for all the expenses that he has suddenly incurred. Sunday, April 05, 2009 01:59 AM Daddy came home today Can you believe everybody is home today? I was so happy to see Daddy I actually stopped watching TV for 2 minutes. I have had a pretty good 2 days so far. On Friday of course we had to go to PRMC 1st thing to have a blood draw. My platelet count was right on the verge, so they went ahead and ordered them and 1st thing Sunday morning I have to go to PRMC to do a blood draw and more than likely I will have to have the transfusion. At least I might not have to see a hospital on Saturday. After all of that Mommy rushed me around so I could do what we usually do before my next round of Chemo. My other counts were high enough so we could go to the movies! YEA! We went and saw Monsters vs. Aliens and got popcorn. I got to see it with Miss Laurie and my friend Christian. Also we got to sit next to Mr Bill, Miss Renee and my older friend Elizabeth. It was so cool because we watched it in 3-D and where these glasses. After the movie I was tired and fell asleep on the way home. I ate very little dinner and went to bed. I am so looking forward to seeing Daddy tomorrow. First thing this morning Nana brought the Dailey Times in after walking Bailey Dog and I was on the front page. There was a picture of Mommy and me and a story updating my progress along with all the support the whole community has been providing our family from the beginning. I ate a little breakfast and was watching my shows when Daddy came in. Then I got to make cards with Nana, I love crafts. I did not get to see Daddy too much he had to go to work today and besides he looked silly wearing a mask. We still want to be super careful, because we do not want any complications before Wednesday’s Chemo Round 5. For the rest of the day I watched TV and did lots of stuff with Nana. Mommy got to go out and run some errands. I wonder if she was getting anything for me. I still am not eating very much, I am just not that hungry and my mouth is still sore. If you look at my pictures there is a silly picture of me with glasses and a bunny face. Miss Tonia, Addison and Robert gave me them last week, that was fun trying to eat that pudding. Well I am tired and I need to get some rest, since I was a good girl today Daddy is supposed to bring me home a doughnut for breakfast tomorrow. Maybe if the weather is good tomorrow and everything goes ok at PRMC I might go to the Easter Egg hunt at Pemberton Park tomorrow. I love scavenger hunts. It was a little to breezy to go outside today for me. Ok, got to go to sleep! Brookie What a day, I was so happy to see Brooke even if it was only for a short time. I must also say a very big Thank You to the Marshall family for taking care of me at the Hampton Inn up North. I must also Thank Amber working the desk for going out of her way to make sure I had everything I needed, you are awesome. Little hectic up there with all the wrestlers in town for the meet. Hopefully tomorrow is very smooth and Brooke can enjoy a couple days having fun before we start this again. This round will be rough, one of the drugs she got in round 3 she gets again and it is very strong. (Cisplatin) This has really been a long week. Hopefully we all can regroup for a couple days and be ready to focus on the next round. Well it is late and I just wanted to keep you all informed since now she is home and doing better. Thanks for being there this week for all of us and since the beginning. Rob Friday, April 03, 2009 12:45 AM Back home from CHOP Hello everybody, Brookie here to let you know how I am doing. I was discharged from CHOP today to come home around 4PM and arrived home about 8:30PM. My counts have gone up, my fever has gone away and I have been eating a little bit. I do have to go to PRMC at 9:30AM tomorrow for blood work and more than likely another platelet transfusion, but at least I get to be at home and see LuLu and Nana will bring Bailey dog tomorrow, which is where she has been staying since Monday. Since last Friday I have had 2 blood transfusions and 3 platelet transfusions. I am sad though, coming home today Daddy did not bring us home and I won’t get to see Daddy until Saturday. Grammy brought me and Mommy home because Daddy has been sick. Daddy thought he was having a bad allergy attack on Monday and Tuesday, but by Wednesday Daddy did not get out of bed and was very sick. After going to the Doctors today it turns out he did have an allergy attack but also the flu and still had a slight fever today. It was a good thing Daddy did not come to visit, because he wanted to make sure that he wasn’t having more than an allergy attack and it turns out it was. The Doctor, Mommy and Daddy decided it would be best if Daddy stayed at a hotel for a couple of days. I can not take any chances, because I start my 5th Round of Chemo next Wednesday and I need my counts to be as high as possible. I sure hope I get to see him soon. I also hope tomorrow goes good at PRMC. Mommy and I have been living in the hospitals since last Friday. Seems weird to come home from CHOP and go right to PRMC the next morning. Well I am going to go to bed for now. Many thank yous for all the extra prayers and to my team at CHOP for getting me better. Just another day in the life of the Mulford’s. I do feel much better today then yesterday about 400% better. The Doctor did put me on antibiotics because I still had a slight fever today and to make sure I am well for next week. I am so glad I did not go up and visit Brooke on Tuesday, not only could I have infected her but all the other sick children up at CHOP. I do miss Brooke and Amy terribly, but we just can not take any chances. I did sanitize the house in a mask and gloves before I left today so Brooke will come home to a sterile environment. Hopefully all goes well at PRMC tomorrow and by Saturday I can see everyone. Everyday brings a new challenge, but as long as we can keep moving forward and on the time line with her path that has been outlined by her Doctors than that is all we can ask and be THANKFUL FOR! Well I am going to get some rest, I feel like I should be well rested after spending a day in bed. Rob Monday, March 30, 2009 09:39 PM Update on unexpected visit to CHOP It’s Brookie with the long awaited update. Daddy has talked to Mommy a couple times today and this is where I am at this point. Last night after they did all my blood work I first had to receive platelets. Then I received another blood transfusion. Around 3:30AM this was all completed and I could get some rest. I slept in this morning. Mommy got to speak to Dr. Maris and that was a big help to Mommy, to ease her mind a little bit. He said, “From here on out it was going to be rough, the Chemo I am taking is very strong and my body’s immune system is very weak and just can not fight back like it should and I am so small to begin with.” I will be here for awhile so I can get my counts back up to start my 5th round of Chemo next Wednesday. I still did not eat hardly anything today, but I did ask to play on the computer. That was a big sign to Mommy that I was feeling better. I have not even wanted to do that the last few days. At least being at CHOP maybe now Mommy can get a little rest, because she will not have to worry about every little thing 24/7. It is very important for me to get my counts up so I can stay on schedule with my Chemo treatments. Well that is about it for now, I am in good hands and I do feel a little better today. Many thanks to everyone out there pulling for me! I will talk to you tomorrow, hopefully with some more good news. Sorry for taking so long today with the update, spoke to Amy this morning and did not know much and when I spoke to her this afternoon I was busy at work. It sounds like things are better, but has a lot of improving to do to get her counts and strength back up. At least we know that all these drugs are killing that cancer! Do not have any idea when Brooke might come home, but the main thing is to keep the schedule on track for the next round of Chemo. I do not know when I will head back up to Philly. Late last night I started feeling really lousy. I am pretty sure it is allergies, but need to take a couple days to make absolutely sure. Besides Brooke there is many children up there going thru the same thing and do not need to expose anyone to any germs. Just as an FYI if you are thinking about maybe visiting Amy and Brooke please contact Amy first. I believe she said today that she does not want any visitors until Brooke’s counts have come back up or just wants to make sure that whoever might come is 100% healthy. This is very hard right now not to be able to go up and at least see Brooke or know more of what is going on. On the other hand knowing that Dr. Maris is the attending physician this week is a a great way to know that she is really ok and on track. Also, we can find out more about what Brooke’s treatment schedule will be like for the next few months. We still have 2 more rounds of Chemo, a surgery, stem cell transplant, possibly a second stem cell transplant if she qualifies in the study she is in and it looks like antibody treatments that have shown great results in other studies that is due for FDA approval very soon. Well that is it in a nutshell so I can get this posted before everyone goes to bed. Thank you to all for the extra prayers and messages they have really helped over the last 24 hours! Those messages really get me thru the day! Rob Monday, March 30, 2009 01:41 AM Arrived at CHOP via Ambulance Well everybody, it’s me Brooke again. This has really been a crazy few days. We arrived at CHOP around 9:30PM and I was feeling really bad. Mommy called and texted Daddy and relayed this information. Let’s just say that it was very good that we went to the PRMC Emergency Room today and got to CHOP as quick as possible. As soon as we arrived my mouth was hurting very bad and the Dr. said that is a side effect of one of the Chemo drugs from last week. I received some morphine because it has been hurting so bad for the last couple of days. Just about got this going and the blood work came back. I need another blood transfusion, my red blood cell count dropped from 9.7 this AM to a current level of 7.3. Remember I just got a transfusion Friday night. My platelets have dropped over the week from 125,000 to 25,000 on Friday to 12,000 this AM to a current level of 8,000. I am also still running a fever of 101! Looks like I might be here a few days. No wonder I was feeling so bad the last few days, I should have been complaining a lot more than what I was for the shape I am in. Can you believe my portable DVD player broke before my ride to come up here, what luck is that? Well I did have some good luck; when we arrived one of my favorite nurses is working tonight. Mommy was so happy to see Krista. She also thinks that Dr. Maris is attending all week! That would be great, because Mommy has lots of questions. I am just so happy that I am here now; well I am fading off so good night for now. To say it was important to get Brooke to CHOP is an understatement! I am typing this right now in a cloud scared to death because just did not know the severity of the situation. Amy had to be scared to death after receiving those counts. This has just been unreal these past few days. Brooke feeling good those first few days home really gave a false sense of security. Amy really deserves so much credit for being so diligent the past 72 hours. She has made so many phone calls and taken so many temperatures that you can not even imagine trying to make sure every thing going on was run by someone at PRMC and CHOP. She just knew something was not right. Hopefully now at CHOP they can get Brooke to be more comfortable and get her counts all back to where they should be. Please say an extra prayer for Brooke’s Team of Doctors and Nurses at CHOP that they can quickly get our little girl healthy and feeling better. I should go and get some sleep and not get myself all worked up right now. May the Lord watch over our little girl and all of you out there as well! I will do a journal entry as soon as I here some information in the morning. Rob Sunday, March 29, 2009 04:14 PM Another ambulance ride to CHOP Hi everybody, Brookie again. Not feeling well at all and my fever went up. So it is off to PRMC and then an ambulance ride to CHOP. Mommy and me will be going up and spending a couple days. Daddy will come up tomorrow night. All my counts are super low, except red blood cells because of the blood transfusion. I am not a happy camper at all! Well have to get ready to go, been here since about 1PM and the ambulance is set to take me at 5PM. Hopefully by going to CHOP they can make me feel better and maybe we won’t have to go to clinic on Wednesday since we will be there the couple days before Wednesday’s visit. Sunday, March 29, 2009 10:20 AM Keeping everyone up to date Little Brookie here. It is Sunday morning and I am home laying on the couch watching Noggin. I still feel lousy and I am still running a low grade fever. After spending Friday night at PRMC and having a restless night I woke up early Saturday morning and was able to be discharged, but laid down and took a long nap. Mommy called Daddy to come get us when I woke up and we headed home around 11:30AM. Once home I was still tired and did not feel good. I ate and drank a little, but my mouth is sore and I just do not feel up to eating and drinking. As the day went on my fever kept creeping up. Mommy was on the phone with CHOP throughout the day. This was going to make fun for my ouchie today. Miss Tonia stopped over today to give me my shot, because Miss Liz and Dr. Dave are away. It took awhile to give me my shot, because I really was not in the mood at all. Addison and Robert had to wait awhile outside while this went on. Robert did not mind, because he was asleep. Addison was watching Wall-E and Daddy took Bailey out to see her. Thank you for my very silly Bunny Funglasses. Mommy and Daddy got ready for dinner which would have been amazing under different circumstances, it was all my favorites. I just could not eat. It was made by Beverly Gordy, but Mommy and Daddy said, “The ham, mac-n-cheese, croissants and baked pineapple were great” I love all them. After taking my medications my fever was approaching 101 and Mommy started getting things together for a visit to CHOP. After talking to the on call person, Mommy would take it later in the night and tomorrow morning. The night was restless again, so I am not getting much rest, but my fever is down this morning. I am still running one, but it is lower. We will see how the day plays out. I really really miss all my friends! Well, just wanted to update you all. To everyone, just wanted to keep you abreast of how things are going. The last few days have been very trying and keeping us on eggshells. Maybe the weather is part to blame, it is so gloomy. Thank you all for all the support everyone has been providing and the prayers. It is hard to believe that this has been going on for close to 3 months now and everyone is still out there supporting Brooke just as hard now as in the beginning. Amy and I are very thankful for that, we are both very tired and still in a haze but taking each day as it comes. The ride continues and we are strapped in to take on all the bumps and turns. Well I need to get ready for work, which I have not been at for 3 days now. It is really hard to keep focused on work when all this is going on. I hope everyone out there is in good health and bless you all. Rob PS. Please take a moment and remember Marine Sean Michael Mitchell and say a prayer for his family as they continue thru these challenging times. Give a kiss and a hug to all the people you love as we all know to appreciate what life gives us each day. Friday, March 27, 2009 03:32 AM Another up and down week Hello everybody, it’s Brookie. Not feeling too well this Friday night. Actually I am speaking to you as I am staying overnight at our local hospital PRMC. This has been a real up and down week for us Mulfords. Of course you know I did real well the day after Chemo and had a rough night. Then the beginning of the week was going pretty good, but the last few days I have been really tired, not eating much and not sleeping good at night. Also, the last couple of days I have not handled my ouchies well at all. As a matter of fact yesterday I got so worked up I got sick everywhere. I went to PRMC this morning for a blood draw so they could contact CHOP and see what my counts were. When I returned home Mommy and Daddy gave me the new Disney movie out, Bolt and I watched it with Mommy because I have not been able to go out this week or see anyone because of a concern with my counts. After lunch Mommy got the call that we needed to go to PRMC and have a blood transfusion. This was going to take a little time, because they did not want me going into the ER because of my low counts. They actually got everything worked out and I was going to get admitted so I could have my own room in the pediatric wing and when everything was done I could go home. Mommy got everything ready to go and Daddy met us in the parking lot around 2PM. By the time we got in and got everything situated and all the calls were made to CHOP it would be around 11PM by the time the transfusion would be over. I must say everyone in the pediatric wing at PRMC has gone out of there way to make sure all procedures have been done correctly and made Mommy, Daddy and myself very comfortable. I still do not feel very good and I just want to go home very badly, I am missing home very much. Daddy brought some overnight stuff around 9PM, because Mommy and Daddy just knew I was staying overnight. Around 11PM Daddy got the call to come get me and Mommy, but while on the phone the nurse informed Mommy that I had a fever and we would not be going anywhere. I did not handle this well and was crying to go home. We are all on a roller coaster ride this week. Hopefully Daddy will come get us first thing in the morning. Well right now I am going to drift off for a little sleep. Talk to everyone soon. Well, as you can see another day another adventure. Hopefully the fever goes down tonight and Brooke can come home tomorrow and we do not have to make a special trip to CHOP. All and all this week has been pretty good for just coming off a round of chemo, up to now. On another note that we have to be thankful for is Amy’s Hysteroscopy and D&C that she had done two weeks ago; the results were negative for cancer. These procedures had to be rescheduled 3 times due to all we have had going on. Amy got the results back Thursday, but wanted to let everyone that knew she hasn’t had the opportunity to let you know the results with all the things that have come up with Brooke. 2009 has certainly been full of events at the Mulford household. Pleas say a prayer that Brooke’s fever breaks tomorrow. Saturday, March 21, 2009 01:26 AM Leading up to Round 4 Hi, it’s the long lost Brookie! Since my last words to you all, I had a great few days leading up to my current Chemo round which I started on Wednesday. For those of you keeping score at home this is round 4! If you have seen my pictures or have read other people’s entries on CaringBridge I have been a very busy girl. Let me give you a shortened version, so I can fill you in. Last week I got to have some really fun time with Grammy and Nana as I started feeling better. That 3rd round of Chemo really knocked me out! FRIDAY 13th: I started my day eating doughnuts that Daddy brought home, I did not want to share. I then went to Chesapeake Golf with Mommy and Mr. Brian let me use the driving net and putting green and I played with my new golf clubs I got for Christmas. I had so much fun and Mommy has some really cute pictures that Daddy has to get. Good luck Mr. Brian with your new endeavors, Daddy will miss your place! SATURDAY 14th: I turned into an eating machine, love mini bagels with cream cheese! Today I said goodbye to Grammy and did science experiments with Nana. Nothing blew up, just a lot of foaming. SUNDAY 15th: Mommy went to church and I played inside and went to bed early, because of a big day coming up on Monday. I am going to get to go to school in the morning. MONDAY 16th: I went to school at Asbury and boy was I smiles from ear to ear! It might have been hard to see, I wore a mask the whole time but I loved seeing all my friends. We also got to do a scavenger hunt and when we returned back to our classroom a Leprechaun had came in the room and messed it all up, but I did get a gold coin! It was so great to see everyone. I also got to show the class my Beads of Courage and talk about them. Not to rest when I am feeling good, I got to do something very special. Daddy met me, Mommy, Uncle Johnny, Aunt Johanna and Grammy at the Government Office Building. No, we weren’t paying for a ticket I was going to a presentation to receive a key to the City of Salisbury. We met in the Council Chambers and I got to sit in the Council President’s seat with my Beads of Courage around my neck as the Mayor presented me with the key. I wanted to go open doors right away! It was so cool, all these people from the City were there and my key has my initials on it. I also got to be on TV, PAC 14 taped it. After some pictures I went with the Mayor and opened doors all over the place, I even opened her office door and sat at her desk. My day was not done yet, I then got to go to Market Street for dinner. I have not been in Market Street since all this began. I ordered STEAK! I could not eat enough bread and oil, I missed that so much! After eating a big dinner I had a big bowl of ice cream. I said my goodbyes and it was off to bed, Thank You to Everyone from Salisbury that made this a special day! TUESDAY 17th: Today I ate another big breakfast and did some things with Mommy. Then I got to do something really special! Mommy took me to SOCCER! I was smiling from head to toe. I was out on the field with all my friends, I got really tired but I did not want to come off the field. I then swung bye Market Street to say hi to Daddy and I got to meet someone very special. I met Trace Theofiles and his Daddy Nick, it’s nice to meet people as brave as me! Go Get Em Trace! Then it was time to head home, tomorrow it is back up to CHOP to begin round 4. WEDNESDAY 18th: Daddy, Mommy and me all headed up to Philly for our clinic visit first before being admitted for the next round. My counts were all up and we could proceed, we had to wait awhile before my room was ready. Around 5 PM we got to my room. I would not finish my Chemo until around 10PM. I saw Miss Sara and got some more Beads of Courage. Daddy had to leave to go back to Salisbury. THURSDAY 19th: Those past days of feeling good sure went bye fast. I was very tired and sick all day. It was a very long day for Mommy today. Grammy did her best, but those Chemo drugs do a job on me. FRIDAY 20th: I was very irritable and needy today and Grammy and Aunt Cheryl did their best to comfort me. Daddy was back and I watched Curious George with him. I am hoping I get discharged tomorrow and can stay at Grammy’s. This round is only 3 days! Mommy is looking forward to a very big fundraiser tomorrow for me. Beat It With Brooke Beef N Beer! That was a lot to cover and I am very tired, but Thank You to everyone who is out there praying, they are being heard. Those 5 days leading up to this round made me feel like a little girl again! Hey everybody just wanted to say hi and Thank Everyone for everything. Sorry for the long delay in writing need to be a little better about that so you all know everything is all right. Those 5 days leading up to round 4 were amazing for anybody who got to see Brooke. Of course for Amy and me it is the battery charger we need for the next round. Everyone has been amazing and we truly believe because of all the support and prayers Brooke is doing great in her treatment plan. The key to the City of Salisbury made her feel like the luckiest girl in the world, she takes it everywhere and has shown all her Doctors at CHOP. I truly believe that these types of things and all the fund raisers give her extra strength against the BEAST! They just keep her mind on all the positives and you all out there are part of this process. Right now it is hard on Amy and me. Amy is with Brooke 24/7 and I have to work more now. Spring is coming and the economy is still suffering which makes for other challenges. Please keep the prayers coming, because they are truly working. From those test results we received a few weeks ago to the few days leading up to this current round of Chemo. Talk to everyone soon and look forward to a huge successful fundraiser tomorrow in South Jersey to keep raising awareness about the BEAST! Rob Thursday, March 12, 2009 12:34 AM What's been going on Hello everybody, it’s me Brooke. I know it has been a long time. I know you all know I arrived home last Friday night from my mini stay at CHOP. I also heard there was a super duper big Fundraiser for me in OC that many, many, many people attended. I know it must have been a big deal because Mommy was not here that night and I was very sad. I had a good time with Cassidy and Grammy, but it was the first time I was away from Mommy for that long in a long time. I laid down in the hallway upstairs and waited for her until Grammy eventually got me to go downstairs. Boy when Mommy did come home Sunday morning did I have a big grin! I just want to say Thank You to all the volunteers and supporters for helping me, I know it must have been a long day. Thank You to everyone who drove or gave up time with their family as well. Since I have returned home I have been very tired and weak. I have not been eating a lot or drinking a lot, but have been doing ok. I lay on the couch and watch TV and take naps. I did go for a wagon ride on Sunday during that beautiful day, but I did take a nap on my way home. I just get so tired. Like they said, “the third round of Chemo would be a dousy.” I enjoyed seeing Aunt Cheryl, Uncle Bruce and Cassidy. I also was entertained by Uncle Mike that came all the way from San Francisco for the event. He did an amazing job on the T-Shirts. Thank You for that Uncle Mike! I also have been playing some Wii. Daddy has been at work a lot, so he does not have all the details that he usually does. Grammy has stayed down since she arrived last week. She has been a really big help, so Mommy can take care of some personal matters and Daddy can spend time at work. Mommy has really missed a lot of things she had to do over the last couple of months. One of those things was, Bailey Dog got spayed on Monday. Poor Bailey, she got a lot of ouchies. Today was Wednesday so that meant a trip to CHOP for my weekly clinic visit. This time Grammy went with us, so Daddy could go to work. They did my blood work and it was good enough not to have to get any ouchies until I come back next week for the clinic visit and get admitted for round 4. I did have to get a platelet transfusion though. Hopefully that will give me some more energy going forward. Things were going good and then right before we were leaving they noticed a couple bumps on my head. I have not had a reaction to this before. I had to get some Benadryl and it did not get any worse so an hour or so later we were on our way home. I am asleep in Mommy and Daddy’s bed right now, so it is better than last Wednesday. Hopefully I start getting some more energy and my counts continue to rise so I can have some fun before my next round of Chemo. I have enjoyed seeing Bailey and LuLu. I miss all my friends very much and my teachers too! Talk to you all soon. Hi everybody, what another marathon week we have had. It was a big welcome surprise to attend the best fundraiser I have ever been too. Still just in awe of the whole thing. Prayers were answered again for letting us come home and be able to be a part of that special day. Brooke is very tired and sleeping a lot, and if you know Brooke you know she must be tired because she does not like those naps. Brooke is following the path the Doctors have laid out for her, so that is great. She continues to fight the Beast and says, “She is going to Beat this Cancer!” That is all we can ask right now that she is able to follow the path and we see results as well as her strength to battle along with all of the support that is out there. Please continue to pray for Brooke as that is the best support she could possibly receive and God Bless you all who were a part of Beat it With Brooke at Seacrets! That was truly an amazing day. Saturday, March 07, 2009 01:03 PM UPDATE This is just a quick update to keep everyone informed. Brooke was discharged from the hospital around 5PM Friday night and we arrived back in Salisbury around 8:30PM. Brooke slept in her own bed until 6:30AM and then got in bed with Amy. This is the first time this has happened in a long time. Then she slept until 10AM. The other big thing was that Brooke did not get sick this morning. She also ate some pancakes and they stayed down. Praise the Lord! Amy and I are going to attempt to go down to Ocean City and stay over night and attend the Fundraiser at Seacret’s for Brooke. Grammy and Cassidy are going to take care of Brooke. Hopefully the tag team will be calming for Brooke and enable us to attend the event. This will be the first time that Brooke is away from Amy for more than a couple hours since this all began. I will do a journal entry tomorrow night, but for now this at least gives everyone an update of what is going on. Thursday, March 05, 2009 02:45 AM To Home and Back You just can not guess what I just did or where I am right now? Give up? I went for a ride in an ambulance and I am back at CHOP! This was not super serious so you can relax, my team of doctors just wanted me up here to monitor things better and get my fluids straight. I have had a rough time keeping anything down since I got home. Now let fill you in on what has been going on since Monday. The snow is not the only thing that is crazy. Monday morning came and my blood counts were low so I got a blood transfusion and I was vomiting a lot so the hospital decided to keep us an extra day. With the weather it was a good thing anyway, and besides by the time I would have been done with the transfusion it would have been 9PM by the time I was discharged. This Chemo round was brutal. I did get down to the playroom today and got some more Beads of Courage, I needed them after yesterday. I also had to start a new necklace of beads, I have just had so many things done in two months, my original necklace was just to big. Daddy, Mommy and me just stayed around the room today for the most part and watched what I wanted too. I was very tired and did not have much energy. I am so looking forward to going home. Tuesday was a typical crazy day trying to get discharged. Get everything in order and make sure all prescriptions, discharge instructions, appointments and everything else is all set up. Not to mention pack everything up and get it thru the hospital to the car. Oh yea, those ouchies started again! My poor little legs. We got all this done and we were on the road well ahead of rush hour traffic. I was a lot better on this ride home then in the past. We arrived home around 5PM and guess what? Miss Liz was actually walking Bailey bye our house and I got to see Bailey before I even got in the house. We came inside thru our newly insulated garage so my playroom will be nice and warm for me now. The new paint looked so pretty. Then the most beautiful thing Mommy and Daddy had ever seen was on display on top of the fireplace in our living room. There was a painting on top of the mantle of me holding the umbrella splashing in the puddle that was on front of the Dailey Times. It is 22 X 28. Miss Shelley Benner who we got Bailey Dog from had her Mom who is an artist in California; Doreen Irwin paint it for Mommy and Daddy. We all can not stop looking at it all the time. Well, I was inside and happy to be home and had found all this energy and I said to Miss Liz, “ Look I can walk now and it doesn’t hurt as I was actually running around.” (Tears in Mommy and Daddy’s eyes and I’m sure in Miss Liz’s too) This was short lived though, I was spinning around and fell and hit my head hard on the end of a corner on some shelf’s in the living room. I instantly got sick and lots of worries started for everyone. I did eventually get settled and I played Wii Mario Cart with Miss Liz and Mommy. I still did not feel too well and did not eat or drink much today. Daddy went to the store to get the basics and I called him on the phone to inform him he was sleeping downstairs, because I was sleeping in his bed with Mommy so I would not be scared tonight. I went to bed and slept really good. Morning came, and today was no fun for anybody. I started getting sick right off the bat. I could not even keep the anti vomiting medicines down. As soon as I drank just a little bit of water up it came. Around 11AM, this is where I think Mommy spent the rest of the day on the phone with CHOP, Dr. Alvarado’s office and PRMC. It was just very difficult trying to get me to a place down here where their would not be any sick people around me. Daddy stayed home and Nana came over to help out with me and Bailey. Aunt Kellie came over around 1PM also to give me my ouchie. Boy did she let Daddy have it for saying in a journal entry, YEA Miss Liz is back! I was so tired today and not feeling well that I did nothing and slept on the couch, I was actually asleep when they gave me my ouchie. You know I did not feel good, not to let them give me that needle so easily. Finally around 3PM we got the word we were going over to the ER at PRMC. They said it would only be about an hour of getting some fluids in me. We should all know by now that nothing is short. Daddy called Mommy at 7PM and said, “What is going on?” Daddy came to the ER to relieve Aunt Kellie who came with Mommy and stayed the whole time. Things were looking like they were starting to come around and then I got sick again. At least my stay so far was comforted by the fact that Dr. Dave tracked us down and told Mommy we could not hide from him and a couple good friends were both working tonight. Dr. Don Mullen who lives up the street from us was working the ER and Miss Karen Mull (Christopher’s Mommy) was also working. They helped make me feel as comfortable as possible and were a HUGE help to Mommy! Miss Karen got Mommy dinner, thank goodness for that. Around 10PM things were not getting any better with my counts and that’s when the decision was made to send me in an ambulance to CHOP. Daddy quickly ran home to get some things to make Mommy and me as comfortable as possible when we got there. In the meantime I got an ouchie like I never had before. My sugar was off and they had to prick my finger, I lost it and Mommy was already frazzled. Daddy got back in time and they loaded me up, of all things Daddy had to take my car seat out of the car and they strapped that onto the bed in the ambulance. Daddy got some pictures and we all said goodbye and off we went to CHOP. Going with Mulford luck, Daddy sent us with a portable DVD player and after the first movie it broke! Poor Mommy. I arrived at CHOP around 1:30AM. Well I will fill you all in tomorrow as to what is going on. This time Daddy is not to blame for being behind, he has not had a chance to catch his breath this week, let alone type an entry. Pray for Brookie! I do not know what to say after what Brooke told you all! Since Sunday night we do not know what day it is or where we are. Amy really does not know where she is. I am going to go home after this and get a little sleep and then head to CHOP. We were so looking forward to spending a little time at home. Well you have to say this is something different. You just never know day to day! Again we still just have to thank our support network so much. A really BIG THANK YOU to Shelley Benner two times now ( One of course for Bailey Dog) and her Mom Doreen Irwin for such an amazing gift that will be cherished for a lifetime and beyond! From friends and family coming over to helping out, friends in the hospital and the Early’s dinner that is now back in the fridge. At least the Bound’s dinner got put in the freezer. This is all crazy! We believe it was more a precautionary measure on CHOP’s part to monitor her and get her rehydrated. Hey, just got a text from Amy. It is 2:30AM and they are settled in and Brooke is asleep and Amy says Goodnight! That sounds like good news! I will fill everyone in more tomorrow! P.S. To Grandpa Greg and Grandma Millie, Brooke’s eye appointment last week went ok it was just a super long wait to get seen. P.S.S. To anyone interested out there, I think Bailey’s Mommy is going to be having more puppies in the very near future. Monday, March 02, 2009 01:45 AM Round 3 Completed I am so jealous of all my friends out there that will be playing in the snow while I am in this hospital. This round of Chemo has been ok, but it has really made me moody and this stay has been draining on everyone. It has been the first time where I have really cried to just go home. At least this round is only 4 days and not 5. Looks like we might be stuck here an extra day because of the snow. If we are here till Tuesday then we might not have to come back on Wednesday for clinic. As Daddy says, “One day at a time!” Saturday and Sunday have been pretty much the same, I am very moody and fly off the handle. I am not eating much at all and I have been getting sick a few times. Saturday Grammy stopped bye to see me and then Aunt Marcie and Uncle Ronnie paid a surprise visit, Mommy was very glad to see them. Well, maybe not after giving me this blue slimy stuff that made a real mess. I sure had a good time with it! I was a real handful going to bed. I am supposed to go to bed at 8PM and I finally fell asleep at 11PM, Mommy was beat down. Daddy was no help because he was at the McDonald house. Sunday morning arrived and I did sleep a tad latter. I had a visit from Uncle Johnny and Aunt Johanna. Daddy got to room late again, he took to many pills for his back and slept thru his alarm. His back has been really bothering him on this stay. When he walked in he said, “Where did you get that Chef Mickey Pin and picture?” I told Daddy it was in a bag that I was allowed to open today and it was from the Richardson’s. I also opened my last gift from the Second Grade Class from Salisbury Christian School. This has become such a joy to open one gift a day from SCS. Last visit it was from the Fourth Grade Class. Since it was my last day of Chemo I got to open one other gift, it was from the Becker’s and it was stickers and a journal. I have lots to keep me busy. I however was in my duel personality phase and was not very nice to Uncle Johnny today. (I am sorry Uncle Johnny; these Chemo drugs have done a number on me) I did play games with Aunt Johanna till her and Daddy went and worked on a Fundraiser they are doing for me up here in South Jersey. (I will list the next two events after this entry) I was starting to feel better before they left, but it was time for that bandage change. I have been a lot more rougher on my bandages and everyone agreed it was time to go to a bigger bandage, more area to hurt Brookie. The nurse did not like how my port was attached and said she would notify the surgeon to stop bye and look at it. I was calmed down and Mommy left for a little bit to walk Uncle Johnny out and Aunt Johanna and grab something to eat. It was good she left because now I could make Mommy a card with a little help from Daddy, Mommy really needed a nice card from me. I worked really hard on it and on the back I wrote I WILL BEAT THIS CANCER!!! Mommy loved it. Everything was short lived, the surgeon came in. He looked at my Medcomp line and informed Daddy I would need a stitch. Daddy’s face turned pale and had to call Mommy very quickly. The surgeon was wasting no time and Mommy went for a quick walk back to the cafeteria. Mommy has been here for every procedure and there would be no starting now without her. Mommy made it back and I had to get an ouchie, to numb the area, a stich and another dressing change. I told them ohh no, already had dressing change and this was going to hurt very very very badly for Brookie. It did, I screamed super loudly on the stich. I was drained after this, but I fought going to bed of course. Daddy left around 9PM and Mommy told Daddy that I went to bed in about 5 minutes. I miss Bailey and LuLu and home so badly, I also cried some more today because I just want to go HOME!!! I want to say hello to Kara from Delmar and I am thinking about you and all the prayers that are being said for me are for you too! We are all in this together and there is strength in numbers. (Hi guys!! Just wanted to let you know your family is in our prayers. My family is going thru the same thing but a different type. And thanks to your story in the daily times is how we found out.My 10yr daughter has osteosarcoma(bone cancer) and its spread to her lungs. We are from Delmar. So Brooke, Kara(my daughter) says hello and wishes you good luck with everything!!!) I also want to say hi to Trace, and I am glad his counts are all doing good and he is playing some baseball! Well everyone, what a week. Praise the Lord for all the good news we have been blessed with as the marathon continues. This round has been very emotional for Brooke and the stitch tonight was icing on the cake. Hopefully we can come home tomorrow night, but it is about 1:30AM right now and outside looks terrible. We will be in no rush to leave in bad conditions, with the precious cargo we are carrying. I just have to stop for a minute and digest how much has happened in the last two months. The new understanding of life, the wickedness of the BEAST, the support of family and friends, the generosity of our community, the support and prayers from everyone, the miracles of the Lord, the strength of our little girl and all children out there fighting and the overall strength of my wife AMY! To you 7 days a week 24 hours a day, I LOVE YOU! I sometimes can not type fast enough to put down what I am thinking. I know that we are truly blessed! Friday, February 27, 2009 09:29 PM Great News from the biopsy Hi everybody! Me Brookie on day 2 of my 3rd round of Chemo. I woke up this morning and was ready to go. I was hoping to see Daddy early, but he did not arrive to late. He got caught in the Vice President visiting the University of Penn traffic and a lot of work going on around CHOP. I ate a big breakfast which was great because I did not eat much yesterday. When Daddy arrived we played for awhile and we all had a good time. I had to go to an eye appointment which took about 2 and half hours. I was fussy and a handful for Mommy. When I got back to the room I spent some time with Grammy and hung out with Daddy, while Mommy went to get something to eat and Grammy went home. All day I was on an emotional roller coaster, from the Chemo drugs. I got a late start on my Chemo treatments today. I also had fun with Miss Sarah today as I got some new beads of courage and I got a stuffed monkey that is called Patch. This is a special animal that came with badges of emotions that I can show people how I am feeling. I have difficulty lately explaining how I am feeling to everyone. This is a short entry, but I wanted to tell you all something. Late tonight Mommy received a message from one of my doctors. The message stated this. From yesterdays bone marrow biopsy and aspiration the results are as follows: The first test I had back in January showed that involvement in my bone marrow was 80 to 90 percent. This test showed that the involvement in my bone marrow is 10 to 20 percent. This is the best news we have received yet. I now must go to sleep, but I think Daddy wants to say a few things. I will talk to you all soon. As I try to write this now I have tears in my eyes again, but tears of joy and such happiness. When Amy called me, because I was at the McDonald house she said, “I have some good news and I listened to the message 6 times to make sure I heard it right.” As Brooke stated that is incredible, and better than anyone could hope for. We will find out more tomorrow, but for tonight we will all rejoice and thank the Lord for his work he is performing. We will also pray for him to continue his magic, because we still have a long road to travel and many ups and downs to go. For today we will cherish the tears of joy. The Chemo she is taking this round is very strong and greatly affecting her emotions. I thank everyone for all the prayers, because they are being heard. Will keep everyone posted. Good night for now! Rob Thursday, February 26, 2009 10:03 PM Chemo Round 3 How is everybody doing? I am a little nauseous at this point, but I have had a great few days up to this point. I will bring you up to speed, because Daddy blew it again. He thought he at least posted the scan results, but did not. I am taking matters into my own hands and will fill you all in, OK? OK! Mommy got a phone call late Sunday from Dr. Weiser and informed her from the CT Scan that the tumor had definitely shrunk and the MIBG Scan showed that the cancer in my bones was not as bright as the first time. The first two rounds of Chemo were working and doing what they are supposed to do. YEA BROOKE! On Monday I was going to get the bone marrow biopsy, but a slight opps happened. I ate breakfast and was not supposed to eat after 12 Midnight on Sunday night. I could not have this procedure done again until Thursday AM. This also pushed back my Chemo. This is not a major problem and it actually did our family good. Mommy and me stayed at Grammy’s and did not return home, so we could take a break and relax and a couple extra days of me feeling good. I always feel good before the next round of Chemo, so I got a couple extra days. I also had some photos taken of me by a photographer for a special event I will be participating in. Stay tuned for all the details, but I will say the photos are truly amazing! Daddy was not around for a few days, he was home working so he missed a lot of fun. Thursday morning came and I was not even awake, but I whispered to Mommy with my eyes closed, “Do not feed me.” Mommy, Grammy and I got in the car and headed to CHOP. I was really missing Bailey and I wanted to see my Daddy before my procedure. Daddy was being driven up to CHOP by Nana, they left Salisbury at 6AM. I was in the day hospital at CHOP and just about ready to go when Daddy and Nana barely made it. I had the biggest smile and just that fast I was whisked off to be put under sedation to have the procedure. This procedure is no fun. On one side of my back they draw fluid from my spine and on the other side they scrape a bone chip. I am very sore and I have two matching band aides right above my heiney. That is so silly. I was taken back into my room and woke up around 20 minutes later. I was very not with it, but I sputtered out my DS game! The nurse said, “that was the first time and quickest anyone ever said they wanted a game.” It was my new DS game, My Little Pony from Grandpa Greg and Grandma Millie. I have not put that down for 3 days! Now we had to wait to be admitted when a room became available. They were able to begin the 3rd round of Chemo though. We hopefully will find out the results of the tests sometime tomorrow. For a couple hours I had a lot of fun with my family. Around 3PM we got the word to go to our room. It was on the same floor, but on the other side of the hallway. We set up the room, we got this procedure down now. We then all watched the video that Miss Tina and Mr Steve gave us of Beat it with Brooke Walk! Daddy had been saving this so we could all watch it together. It was amazing all those people and all those doggies too! After this Nana and Grammy had to go, and the Chemo was starting to affect me, I did not feel too good. Mommy then went to get something to eat and Daddy and I watched Curious George. I have not been able to do this for a few days, Daddy and me always watch it in the morning. We colored and drew pictures and I got sick again. Mommy came back and Daddy had to get ready to go so soon. He had to still check into the McDonald House and you have to do that by 8PM. We all said our goodbyes and I was fussy and cranky after that. Poor Mommy! Well that is kind of it in a nutshell, I really had a good 7 days you could say up till today and even today I was in good spirits up until around 5PM. Even though things did not go as planned this week, I think it was a good week for everyone to recharge their batteries and get ready for this next round. I am now going to turn it over to Daddy and say goodbye! I just want to end by saying I think of you all out there in so many ways thru the course of the day and you all mean so much to me. All the things that have happened in the last 2 months and all that everyone has prayed, volunteered, letters, cards, donations, gifts, comments, done for Mommy and Daddy and kept me in their thoughts has just been my salvation thru this journey so far, Love Brookie! Hi everybody, sorry for the mess up this week. I did think I posted those results we received late on Sunday but I did not. Sorry to keep everyone in suspense. When we are home now it is hard to find enough time to get everything done. After coming home from being at work I am drained and need to go to sleep. The last couple of days I have been going from 6AM till 1AM. I am beat, so I will finish this tomorrow. The main thing is Brooke got you all updated. Look forward to getting caught up on the websites, email and that Facebook thing! Thanks for keeping us in your prayers and they are definitely working and we continue for more good news! Rob Sunday, February 22, 2009 12:52 AM Thursday Scans and a weekend at home Sorry to leave everybody hanging. I need to keep Daddy focused and if you know my Daddy that is impossible. Well it is Saturday night and I have been enjoying myself. Let me tell you what I have been up to since that great news I received on Wednesday. We left the McDonald house Thursday morning and headed over to CHOP, after I played down in that wonderful playroom of course. First up I had to stop by clinic and get blood work to see where all my counts were, maybe no more ouchies for a few days? The results came back and all my counts were up, so no more shots till after my next round of Chemo. I had a huge smile on my face. No time to enjoy the victory, it was of to nuclear medicine to have my MIBG Scan. This is that Scan where they see what is going on in my bones and I have to lie super still for close to 45 minutes. I gave it my all and I did it again. I got some really cool stickers for my effort. Next I had to rush off to the sedation area to drink 2 full cups of this yuckie red stuff called IV contrast for my abdomen CT Scan. This took awhile, I felt like I was going to get sick. I got a surprise visit from Miss Sara and the world was good. She showed me some cool Beads of Courage I had earned and we would add them to my necklace next week. We played Candy Land and made a drinking game out of it. Mommy and Daddy must have been really thirsty in college, all these games they know that involve drinking. Miss Sara has some special plans next week for me when I come back for my third round of Chemo. I finally finished and it was off for another scan that I had to lie real still for 15 minutes. When we finally got done I was tired and cranky. It has been a couple long days. We were headed back to Salisbury a couple days early though! Mommy was taking me for a special treat on Friday, I was going to go to the movies and get Popcorn! I would have to see Hotel for Dogs again, but at least I would get out of the house. We arrived home and it was around 8PM and guess what, the upstairs had no heat. Since we were supposed to be away for a few days Daddy scheduled some work to be done in preparation for my bone marrow transplant. He was having the garage insulated and new heat installed upstairs so my playroom will be warm and not cold when my counts will be very very low. Mommy and me had a sleep over in the guest room and Daddy slept in the cold, its ok Daddy likes it cold. Mr Dave and Miss Liz brought Bailey down just to say hi, and they took her back because of all the mess. Friday I woke up and ate a big breakfast and was excited about the movies because Greyson and Jordan were going also. I had a lot of fun. I did not get to see Daddy much he had to go to work. Bailey was back home and I had fun with Mommy. We had a sleep over again. Saturday was a really fun day. I woke up and started doing arts and crafts right away and playing with toys. Daddy went to work, but he was home quick. I had a fit and drove Mommy crazy, the workers in the garage knocked the cable out and I was mad. Daddy got it fixed and Miss Liz came over to watch me for a few hours. Mommy was going to About Faces to have a pedicure done and spend some grown up time with Miss Sara. She needed this, A Big thank you to Miss Liz! We played Wii for hours. Daddy came home from work again and we had a big dinner with Mr Dave and Miss Liz. Boy was it yummy, it came from the Fountains. Miss Renee delivered it and I thanked her. It was nice that we all got to enjoy a dinner together before I head back to CHOP. Mommy and me are leaving tomorrow to go to Grammy’s because I have to be there at 8:30AM Monday morning for a bone marrow biopsy. I will have to be sedated for this and I will be sore after wards. We then will just stay at Grammy’s until Wednesday morning when I go to clinic and then get admitted for my third round of Chemo. Daddy will drive up Wednesday morning, he has a lot to do to make sure all the work gets finished at the house and catch up on work. Well I better go to bed, I want to be nice and strong for this Wednesday. Daddy should hopefully be able to let you know about my scans on Monday. Mommy and Daddy are hoping they will be able to tell us what they saw on Thursday. Please pray for me that my third round of Chemo goes well this week, those prayers sure did help last week. I must admit that last week was a lot of driving for the Mulford’s. No rest for the weary back in the car tomorrow. I will be staying behind until Wednesday; there is definitely some things that need to be attended to at work. It was really nice to be home for a few days even if the house is in disarray. It is also very enjoyable to see Brooke on these days where her energy is back up before she starts the next round of Chemo. We pray for good results from her scans on Thursday as well as she prepares for her treatments this week. Amy and I are both nervous about starting the third round of Chemo. The drugs they use this round are very strong and that is why they had to harvest her stem cells, because the next couple of rounds will be basically killing everything in her body. Her immune system will be very low for awhile coming up. It is almost March and for us it still feels like Christmas. We all just exchanged our Christmas cards we still had. The one thing that is constant everyday is the smile on Brooke’s face. It was nice for Amy to get out today, she really wanted to go to the Bingo but just felt it would be very hard and right now she wants to save that energy for the next round coming up this week. We understand the Jaycee’s put on a really nice program and the turn out was good. A great big Thank You to all the people who came out, the volunteers, the Jaycee’s and the Moose Lodge for allowing the Jaycee’s to host the event. Time to head off for bed, good night to everyone and tomorrow give a loved one an extra kiss or hug just because you can! Rob Thursday, February 19, 2009 12:56 AM Stem Cell Rescue Hey everybody, I am a little tired and a little woozy, but guess what? High Fives to everyone. They got over 20,000,000 stem cells today on the first Stem Cell Rescue! They got the target number and I do not have to do it again. It was a long procedure. We were up early this morning at Grammy’s house. Everybody running around and we were in the car and off to CHOP. I slept ok last night thanks to Mommy sleeping with me. We arrived at CHOP about 8:30AM and made our way to the Seashore house where the Apheresis Lab is located to do my Stem Cell Rescue. We quickly got to it. Had blood work done and started getting prepared for the procedures once we got the ok. I told Mommy my counts were up and guess what, I was right the results came back and it was time. They brought in a lot of packages and I got very scared, it looked like a lot of ouchies headed my way! This machine next to bed I was staying in was big and had a lot of knobs and tubes hanging from it. We got everything hooked up and it was not too bad, only a few tears. This was going to take awhile, so I ordered some breakfast and a couple of movies. This would have been torture if I would have had to do this tomorrow again. All those prayers must have worked today, because Mommy and Daddy were fully expecting to have to do it again tomorrow that is kind of the norm we understand. They had to give me a lot of blood to keep everything going smoothly. There were a lot of bags of fluid hanging everywhere. Finally around 2:30PM we were finished. I got to see and touch this special bag of a lightly colored red liquid that Mommy and Daddy both closed there eyes and prayed! This was a lot different than Jesus Juice. For those of you who might of missed that, Jesus Juice is when I have a transfusion. These were the separated Stem Cells that they collected, to later down the road do my bone marrow transplant. All was looking good, until something arrived on the table that caught my eye, it was an ouchie waiting to happen. I had to get an ouchie and a bunch of flushing in my tubies. I tasted a lot of bad tastes in my mouth. I was tired and drained, but my day was not over yet. I was carted down to Radiation to get a shot of dye for my MIBG scan tomorrow. It was late in the day, but if all goes well tomorrow we could leave to go home, that would be 2 days early. I think I might get to go see a movie Friday and Daddy would come too! Tomorrow afternoon I have a CT scan to see if the tumor is shrinking and then the MIBG scan to see if there is less cancer in my bones. This is the scan where I have to lay still for 45 minutes and can not move. If I do they will have to sedate me and that will mean not coming home and feeling lousy when I wake up. Well I have been waiting to see the Ronald McDonald house and boy is it cool! Daddy was right, it has a cool play room. We got all settled into our room and downstairs we went. Just see my pictures and it had everything I like. After playing we had a nice dinner that was prepared by volunteers. Tonight’s was done by The University of Penn’s Law Team. It was awesome! We then got to see some doggies that were brought over from the University of Penn’s Vet program. I sure do miss Bailey, but I got to pet her on my Daddy’s computer screen today. It was time for bed and I fought that. I hope tomorrow goes well so I can come home early and see my house for a few days before coming back on Monday! Good Night and thank you to everyone for all those prayers, they sure worked today! I want to say a prayer for Trace who went to AI dupont late Tuesday night with pneumonia in his chest and an infection in his left ear. Please God heal Trace fast so those counts do not go to low! Can you believe they harvested over 20,000,000 Stem Cells today? They got their target goal on day one, How happy were Amy and I? It was a long procedure and Brooke was a trooper! She then went and had another procedure to boot. She has a clinic visit tomorrow, just to do some blood work and make sure all counts are ok before returning home. Then she will get the CT scan and MIBG Scan too see how the first two rounds of Chemo have done. Next week begins her third round. Monday is a bone marrow scan. She will have to be sedated for this, and it will make for a long week. That is the procedure Brooke likes to call when she wakes up and has two band aides on her hinny! Mommy they take my bone marrow, and leave two band aides. She is sore after this! We also understand that the drugs they use in the third round are strong and it could be a tuff week on Brooke. We will cross that bridge next week! For now I need to go to bed, but wanted to keep you all up to date! PS. It’s Brookie! Daddy forgot to thank the 4th grade classes of SCS from our last visit. Daddy’s cousin Sheryl and husband Mr Dave put everything together from Mrs. Black and Mrs. Wackett’s classes and I had 7 days of presents. I opened one everyday on my last Chemo round. I got to open the package and card every morning after I ate my breakfast. Thank You everyone Tuesday, February 17, 2009 12:07 AM Valentine's Day and Back to CHOP Hi everyone, me Brookie! It is Tuesday night and I am asleep, but guess where I am sleeping? I am at Grammy’s, not at the McDonald House in Philly where I was supposed to be staying Monday thru Friday. I had to come home to Salisbury on Monday because my platelet count was too low. We will be going back to CHOP Wednesday morning at 8:30AM to see if they can run some tests and do my Stem Cell Rescue. Monday was a long day in the car up to Philly and back to Salisbury and on Tuesday back to Grammy’s in South Jersey. Now everyone knows where I am I will fill you in what I have been up too! Since last Thursday I have been doing better. I have been eating a little better each day, but I never know what I want or when I want it. My poor little legs are all black and blue from those ouchies. I really know what band aides come off easy and which ones hurt by now. I have been enjoying spending time with LuLu and Bailey Dog. I got to run by Asbury last Friday to drop off Valentine’s Day cards I had made from my last visit to CHOP and Daddy took the other cards to my class at Salisbury Christian. Daddy said, “ the Prayer Chain was very big and he loved the big pictures of me hanging up in the hallway.” Grammy came down for the weekend to help out, because Mommy is very tired. I have been watching a lot of TV and movies. I have not been out a lot or seen to many people, I have to very careful because my counts have been very low and they are coming back up. This week is very very very important for me. This week is when at CHOP they will do my Stem Cell Rescue. This is a one time shot. These will be the only cells I have to last me for any future procedures, after the next round of Chemo I will not be able produce any more to harvest. Also this week I will be doing a couple scans and a MIBG scan to see what the Chemo has or hasn’t done up to this point. I have become very knowledgeable about my shots, tubies, blood cell counts, Chemo, dressing changes and of course band aides. The best band aides are snoopy ones, Thank You Dr. Alvarado’s office for giving me a box to take to CHOP. I have been driving Mommy crazy. Daddy has been working lately, that is why he is so far behind. We did have a very good Valentine’s Day. I worked very hard on Daddy’s card. We all exchanged some presents and played Wii for awhile. It was so nice to be a family at home for a few hours. Daddy went to work Saturday night around 5PM and did not get done until Monday morning around 3AM. Sunday was really cool, Grammy left around 2PM and my cousin Cassidy came down around 4PM with my Uncle Bruce and Aunt Cheryl. Cassidy had a tour of SU on Monday; she is a junior in High School. How cool would that be for me? Monday came and we all got in the packed car and headed to CHOP for the week. I did good on the ride up. After that things did not go as planned. My blood work came back and everything was low, so low on my platelets that I had to get a transfusion. The doctors told us that they could not do anything until Wednesday AM. Back in the car and it was not a fun ride. The last hour was very long for Brookie. We made it home and Dr. Dave brought Bailey back home and I was very happy. Miss Liz is in Florida this week, boy do I miss her giving me my shot! Tuesday AM I had a lot of fun with Mommy and Daddy again snuck off to work. Later in the Day we left to go stay at Grammy’s and I was looking forward to that. The ride was very long and stressful for everyone; we will leave it at that! I went to bed after visiting with everyone; of course Uncle Johnny and Aunt Johanna were there. Well I am going to bed now; I have a few important days ahead of me. I miss all my classmates very much and I am very thankful for everyone out there pulling for me. Mommy and Daddy read me notes left on my sites, give me a present here and there and read me special cards. A big smile to all. Wow, how time flies! It has almost been a week since the last update. I will be more punctual when we are at the hospital receiving treatments. These are the times when I have more time and need to write at the end of the day to relieve stress. The last entry was very emotional and I probably should not be writing at 2:30 in the morning. As you can tell Amy and I are very tired and Brooke has become very demanding and her emotions change on a dime. I also need to start being at work now and trying to budget time has never been my strength. When Brooke goes to bed now, we are quick to follow because she only sleeps soundly for a few hours. I just wanted to say thank you to everyone who helped emptied out our garage this weekend so we can have it insulated and some upgrades to our heating and air system upstairs and special filters put on the upstairs and downstairs systems so when Brooke has her stem cells done and comes home and is in the house for awhile it is a safer environment. Also a big Thank you to the last few meals we have had. They all have been so good. Mike and Kim that was a complete meal that we are still enjoying, wow! I also want to say hopefully over the next 12 days I will be able to answer some emails and catch up on some matters. I have fallen far behind on some things, but when we are home now I try to enjoy the time with family and get caught up with work and we are all really tired from the last several weeks. We will hopefully be back home Saturday night, but we will be leaving again Monday morning for some more tests and on Wednesday start the third round of Chemo and be back the following Monday. If all goes well and Brooke is feeling ok Amy and I can attend the TEAM BROOKE Get Lost at Seacret’s Event. To everyone a good night and God Bless! Thursday, February 12, 2009 02:02 AM Comming home a day early Oh my, it has been awhile Daddy has really been slacking. The last time you all have been updated was last Friday. I will try to bring you all up to speed. Saturday was a relatively good day in the hospital. I definitely go thru a lot of mood swings when I am on the Chemo. I can be quite a handful according to Mommy and Daddy. Saturday Pop Pop and Mom Mom Mulford came bye and we celebrated Christmas. If you recall the Sunday I came to CHOP was when I was supposed to go to their house to celebrate Christmas. I had a good time opening presents. Later that evening Uncle Johnny and Aunt Johanna came bye and brought Mommy and Daddy dinner. As you can tell on the front picture of Caringbridge, Uncle Johnny is crazy and we love to get in trouble. Going to bed is hard, because I have so much energy and this is the time of day when I feel the best. Night time is also tuff on Mommy because Daddy has been staying at the McDonald house. Sunday was a day of excitement because of the possibility of going home early. I have been doing well with this round of Chemo. I have been eating some strange things for breakfast, pancakes are out these days. As usual I get a big smile when Daddy arrives in the morning and Mommy looks worn out. One of my favorite nurses Krista came in early to get me started on my Chemo so if my blood work from last night looked ok, then I could go home. A little later it came back and looked good and we would all be going home a day early. We were all so excited, I would get to see Bailey! In the meantime Aunt Marcy and Aunt Alice stopped bye to check on me. They brought me some more cards and Girl Scout cookies for Mommy and Daddy. Daddy was running around trying to get things loaded in the car and I was being very cranky. Maybe it was because I had to have a dressing change and that is so traumatic for me. After all this we left the hospital around 4:30 PM to head home. I did not want to leave the hospital, sometimes it is scary leaving places for me. I had a good week for the most part. Everything was going good and then about 45 minutes before I got home I got really sick. When we got home I was really glad Mr. Dave and Miss Liz brought Bailey back so I could see her. I got sick again and Mommy and Daddy were very concerned, did we leave the hospital too early? I went to bed and I was exhausted. Monday I woke up and was moody and ate some strange stuff for breakfast and Daddy stayed for awhile too try to play with me to give Mommy a break. I was really not feeling good and got sick again and going to the Potty is really painful again. Daddy went to work and I went outside for a walk with Bailey, Miss Liz and Mommy. I also had to start taking those ouchie shots every day again. Daddy came home for a bit to take Mommy’s van to the shop to fix the windshield, it completely cracked all the way across last week. I got to ride my new scooter outside with Daddy for a little while. I got very tired. Daddy went back to work and Miss Kellie came over and made Dinner for Mommy and I. I did not each much and got sick again. It has been really rough since I have been home. I went to bed and got up a few times thru the night. Tuesday I woke up and Daddy had to drop the van off for a new windshield and go to work. I was really fussy and not happy. I did get a little better when I was playing Wii with Miss Kellie. I also had a waffle with pickles and I was a little better. Daddy brought the van home and I played with him a little. Daddy wanted to see me, because Mommy and me were leaving later to go to Grammy’s to stay the night because I had an early clinic visit Wednesday morning. I was really struggling going potty and eating much. It was a tuff morning. I also had a tuff trip going home. I was happy to see Grammy, but I nor Mommy got much sleep. Wednesday I went to clinic with Mommy and it was the first time Daddy was not with us. To begin with, it was a very long day for Mommy! I had all my blood work and that ouchie shot. I then had to have a blood transfusion and I was cranky and throwing tantrums. Mommy was getting bombarded with lots of info also. See next week, I have to have lots of tests and we will all be staying in Philly Monday thru Thursday more than likely. It was late in the day when we were finally done and still had to drive home. Mommy was done before the ride even started. She took 2 wrong turns on the ride home and it was late getting home. I was very happy to see Daddy, but that was short lived. I was just spent and saw Bailey for a bit, but I went to bed. Thanks Mr. Dave for bringing her home so I could see her. As of right now it is 1:30 AM and I have not woken up yet. Either has Mommy, she is exhausted! Sorry for being out of touch for so long, it’s just everyone’s schedules are so out of whack around here and Daddy is trying to go to work a little bit. I will talk to you all soon! Again thank you all out there for praying and thinking about me! I also just want to send a big thank you out there for all the things I have received; I truly am a blessed little girl in so many ways. Good Nite! Hi everybody, its Brooke’s parents. As you can tell it has been a few days since writing. We are definitely struggling at this point with our new lives. Schedules and finding time is a challenge. Also for the first time I have not wanted to write, the emotions I am feeling right now are very emotional and hard to put in words. We went from being on such a high for coming home early with the good week Brooke had to not even getting home and lots of problems developing. The mood swings are draining on us. The getting sick makes us worry because of dehydration and malnutrition. The weight loss is scary. The things Amy and I have to still do in our lives. The information we have to remember and absurb to make decisions is confusing. Brooke is doing great considering the amount of drugs in her body; her parents are I guess you could say really just living minute to minute. It is really just a blur. Starting next week we will pretty much be in Philly for two straight weeks. I don’t know where I am supposed to be most of the time? I have moments of utter joy being with my daughter and in a split second tears fill my eyes as I look at my daughters face and tell her Mommy and Daddy love her so much and everything will be ok and inside I am just all torn up. I can not even watch certain commercials or shows without just falling apart. To have to see a child do what she is doing is just unfair. For a 4 year old to know about Chemo, blood counts red and white cells, flush tubes, shots, dressing changes, pain going potty is just not normal. Oh please just give us our baby back! As you can tell Amy and I are struggling right now and each in a different way. The marathon is on and we will continue with the ups and downs. We will have to look deep into our faith, pull from the support from our family, friends and community, wrap ourselves in all the prayers that our out there and have the Lord show us the path we must continue to follow during this event in our lives. Thank you all who make up TEAM BROOKE!!!!! Friday, February 06, 2009 06:02 PM 2nd round of Chemo, Days 2 and 3 Hi everybody, Brookie here. It’s Friday evening and I have had a good couple of days. Yesterday was Thursday and day 2 of the second round of Chemo. I have been having them early in the morning after my traditional breakfast of pancakes. I am then on fluids all day, so I go potty a lot. It is a lot better than at night time though. My Grammy came today and I got the new movie Space Buddies, I love those puppies. They remind me of Bailey. I did lots of crafts and worked on Valentine’s Day cards. So far no rashes and only slight nausea in the AM. I have lots of energy and am keeping all the nurses and doctors on their toes, I know all the procedures they are doing and I explain how they are to do them. I got to give out some hugs to some of the nurses I remember from last time. I also now love to ride on Wall-E! I made it very difficult on Mommy last night trying to go to bed. I was not tired at all. Daddy slept at the Ronald McDonald house, his back has not recovered from the last stay. Friday I woke up early and was full of energy. I was on the go all day. I ate breakfast and started my Chemo for my 3rd day. I was down in the playroom doing crafts. I came back from the playroom and played on the computer, I really love that now. I worked on Valentine Day cards again. Grammy came bye today and brought some cards from Mommy’s high school friend Lisa Orensky. The neat thing was all these cards were mailed to her from the Cricut Card Fairy. All the cards were handmade, Mommy, Daddy and I were very impressed. Nana then came bye and I got another movie, can you guess which one? It was Madagascar 2, I like to move it move it!!! I then went to an eye appointment, my doctor that Mommy has been bringing me too is from CHOP. We saved a special trip to have to see him. My amblyopia is doing ok and has not gotten any worse. I was at this appointment for 3 hours. They are concerned about my Horner’s Syndrome in my eye caused by the neuroblastoma. They will be keeping an eye on this. I finally got back to the room and played on the computer again. I then ate dinner, guess what I had? I had Salmon and watched Space Buddies again. I played with Nana and it was a good day for the most part. I continue to love getting my daily picture of Bailey from Miss Liz, aka one of the Dog Walkers. I miss Bailey so much and LuLu too! I hope I can see them both soon! Well everyone, good night and I love you all!!! Well everybody, you can see Brooke has had a good few days for being in the hospital receiving Chemo treatments. Amy and I also have had an easier go around of getting used to what to expect. It is still hard to swallow what has happened and the road ahead of us, but with all the support we have received and continue to receive it has definitely made the road easier to travel. Please continue to pray for Brooke and may the rest of her stay this time continue to go well. Talk to everyone soon. Rob Thursday, February 05, 2009 01:10 AM Good days before heading back to CHOP Hello everyone, me Brookie here. It is Wednesday night and I have not talked to you all for a few days. I am going to get you all caught up. Daddy needed a little break and when traveling and trying to be here, there and everywhere and keeping me straight it is a little challenging. Monday morning I woke up and no time for pancakes, I grabbed a cut up waffle in a plastic bag and ate in the car on the way to school. That’s right I went to Asbury for about 2 hours to see some classmates and be a 4 year old for a day. Mommy and I were so touched by the long prayer chain. I was happy to see everyone and especially Mrs. Smith and Mrs. McCoun. I went home and Miss Tara and Mr. Jim came over with my Buddy Grayson. We finally exchanged our Christmas gifts. The day was not over yet, I then made cookies with Grand Pop Greg and Grand Mom Millie, the ones Mr. Mike and Miss Dawn gave me on Sunday. Just as I was winding down Miss Chris brought over dinner and a Wii game that we played together. I was tired and went to bed, what a day I had. I needed a good nights sleep, because we all were leaving tomorrow to head to Grammy’s before going to CHOP for my second round of Chemo. Tuesday I was up and eating pancakes. I have not seen Daddy too much, because he was doing some time at work before being away for awhile again with me and Mommy at the hospital. I played in the morning with Bailey, because I will miss her so much again. I also played Wii with Grand Mom Millie. Grand Pop Greg and Grand Mom Millie are leaving Wednesday morning for South Carolina to visit relatives and then will fly back to California. I will miss them so much, they were such a big help to Mommy and Daddy and making me all my pancakes. Daddy came home and we packed up the car and we said our goodbyes and off to Grammy’s we went. We were driving in bad weather again. When we finally pulled up to Grammy’s I had the biggest smile on my face, just see my picture in the middle of the balloon. We got settled in and guess what? Mommy and Daddy were going to attempt to go out to that restaurant again that they have now missed 3 times. They were going with Uncle Johnny and Aunt Johanna to Restaurant 233 in Collingswood. It was snowing hard, so they did not know if it would be open and they would miss it again. They went late, because I did not want to go to sleep. They had a good dinner and Daddy said, “it was awesome, they were very nice, even though there was not many people in there.” This was a big deal to Daddy, because Daddy has not been out to a restaurant in a very long time, and he lives in his restaurant. Grammy got me to bed and around 1 AM Mommy had to come in and sleep with me. Wednesday I woke up and I was downstairs with Grammy doing some crafts while Mommy and Daddy were sleeping and Grammy was making breakfast. Everyone was running around and we were on our way to CHOP for a 5 to 6 day stay. I had so much fun with Grammy and Pop Pop Dave. Luckily the roads were clear and we got there only an half hour late. We signed in to Clinic and we were back in the exam room in no time. I wanted to cry, because by now I know all the signs of ouchies coming and there was none. I gave all my blood and I went out to the playroom to wait for the results. I gained a pound since last week, better than losing weight. The results came back pretty fast. Everyone hold their breath. GOOD NEWS. No fever and all counts good and slightly up. We got admitted to our room and we were beginning our Chemo treatment by 4PM. I also got some music in down in the playroom. I saw some of my favorite nurses and saw my favorite person Miss Sara! Daddy got all my stuff up to the room and all of us hung out and had a good day. I went to bed around 8:30PM. Mommy is not letting me stay up till 3 AM this go around. Well that is where we stand. We all pray that we can get thru this easier than last time, less ouchies and hope we do not have any serious set backs! Good night and A big Hug and Kiss to everyone out there praying and thinking about me! Wow, what a few days. Life is definitely different. Take everything day by day and being on the run. God bless my employees, because I am not at work much and that continues to wear on my mind. Amy and I have really appreciate all the help from everyone: Jet carpets cleaning the carpets in the house, Robin Wilson cleaning the house, Inacom getting our laptops straight, Alarm Engineering getting the alarm straight in our house, all the meals from everyone, Green Hill, Asbury, and Salisbury Christian School working with us, Kip, Colleen and Bryan working on Insurance, Everyone who has been doing fund raising and donated so we can focus on Brooke and not worry where every dollar is coming from to pay all the bills that are starting to pop up and just to everyone our gratitude can not be expressed to ease our stress. It has helped us as a family so much to focus on Brooke and be able to spend time when she is not doing well and spend time as well when she is doing good. People told us to let people help and it is not in Amy or my character and I am glad we did listen, because Brooke is the one who has benefitted the most, so in turn God Bless everyone for that. Of course we have to believe that things are going better, because of all the prayers all over the world. It is truly amazing and touching that from England to the West coast Brooke is wrapped around so many prayers. Amy and I just can not thank you all, the prayer groups, prayer warriors, congregations, individuals, parents, children, grandparents, uncles, aunts, cousins, friends, mommies, daddy’s, strangers and animals that are and continuing to pray. That is all Brooke, Amy and I can ask, from the bottom of our hearts thank you!!! We will continue to keep you updated day by day on how Brooke our little Angel is doing. Rob Sunday, February 01, 2009 10:03 PM A day at home baking cookies Good day everyone! What a day I had. Last night Mommy slept in my bed to keep me comfy. I woke up and jumped in bed with Daddy for a few minutes, but he had to get a shower and head into his office for a couple hours. Guess what I had for breakfast? Wrong! I had my pancakes and Mommy’s. I was hungry. I was playing on the computer and Mommy was doing things around the house. We got a visitor, it was Miss Cathy back from Disney Land with an autographed sweatshirt of Mickey Mouse for me. That was really cool. Then my Nana and Pop Pop Vince came over. A little after 12:30 PM Daddy returned home and we all ate lunch. Nana brought stuff to make homemade Hoagies just like they do up in Philly. I was a little piggy, I ate a lot. I also had Mac and Cheese. I then continued to play on Mommy’s new laptop. Guess what everyone else was doing? They were taking down Christmas decorations, Mommy was on a tear. Things were good, then Dr. Dave came in with Miss Liz and I knew what was coming. I had to get a dressing change and that was of course a traumatic ½ hour. However Miss Liz is the best, she brought cookies and lots of toppings and I got to make everyone a cookie. I made the cookies in my signed Chef outfit and hat from Brooke Day at Market Street Inn 2 weeks ago. The Chef outfit is so cool! I really love the signature from Fred Sysco, wonder who that is? I continued to play on the computer and everyone else continued to put away Christmas decorations. Later in the day good friends of Mommy and Daddy’s stopped bye. Mr Mike and Miss Dawn came over and Daddy and Mommy were very happy to see them. Talk about Sysco. Can you believe with them not even knowing they brought over a tin of stuff to make cookies? That is just so silly! I then ate a big dinner and did some coloring with Daddy. Grand Pop Greg and Grand Mom Millie watched the superbowl, they were a big help to Mommy and Daddy today putting away things. Daddy got me ready for bed while Mommy got to sneak out and go to Miss Becky’s and Mr. Dan’s Super Bowl party for a little bit. I need to go to bed, because I might attempt tomorrow to stop bye Asbury; one of my two schools and see my classmates for a short bit. I hope I am feeling very good in the AM. I just want to close by saying I feel so lucky to be surrounded by my family and them all spending time with me. There is so many people in this world that do not even have that opportunity. I said the Lords Prayer and went night night. I called for Daddy a short time later, because I needed a hat; my head was cold. A big hello to everyone out there. It was a great day to be in our house and surrounded by family and friends. Brooke was eating a lot, smiling, and having a great day. We hope she is feeling great in the morning so she can go to Asbury for an hour or two and see her friends. Tomorrow will be a bitter sweet day. We will get to enjoy it, but on Tuesday we know we have to head up the Road to Philly to begin the second round of Chemo. Thank you all for your prayers and thoughts and may the Lord be with all you and your families as well! Also, a big prayer goes out to Trace and the Theofiles family as Trace heads to AI tomorrow for another round of Chemo as well. I know he has had a slight fever, so pray that the fever is all gone tomorrow. Also, for his Dad Nick who is having shoulder surgery on Tuesday! Talk to everyone soon! Saturday, January 31, 2009 11:38 PM A Day with the Family Well, good morning everyone. My Daddy has finally gotten caught up. He has posted the last 3 days in my journal. He also has spent a lot of time learning how to work with pictures to save time later. This morning I was very sad, because Daddy did not get done from work and working on the computer to very late, so he slept on the couch not to disturb Mommy. I missed him sleeping with me. I came downstairs early and had some Daddy time. I just smile and Daddy melts. We played a little bit and watched Disney and Daddy then went upstairs for some more sleep. Daddy was supposed to go to work, but after yesterday was just drained and upset. I made him a sticker page with some of my best stickers and put it on the bed so he would see it when he woke up. I love my Daddy! It has been a long time, but guess what? Why was Tigger looking in the toilet? He was trying to find Pooh! I’ve been saying that all day! Guess what I had for breakfast today? Wrong! I had butterfly pancakes with sprinkles on them. Grand Pop Greg is getting crazy! After breakfast Mommy and I read some cards and opened some presents. I want to thank The Women Supporting Women for the Hello Kitty backpack with all the neat stuff in it. Mommy and me wore the hats in it all morning! I just want to also thank everyone for everything! You all have helped me so much on the start of my long journey. The rest of the morning I played downstairs and Dr. Dave came bye with Miss Liz. They brought me a happy meal and Bailey a new pink collar. I think Dr. Dave was trying to butter me up, because tomorrow I have to change my dressing. Daddy finally got up and he loved his sticker picture. I played on the computer for a long time in the afternoon. I played on the Disney playhouse game section and then Mommy and me entered in a lot of Webkinz codes, I do mean a lot! It was a great family day. By Daddy not going to work I had my whole family here all day. A package arrived today and in it was a bunch of bandanas my mommy ordered. We are twins, Daddy took lots of pictures! We all sat down to dinner again, thanks to the Lawson family and it was wonderful. After dinner we watched the movie Underdog and Mommy made popcorn in the hot air popper! Why would you ever want microwave popcorn again? Daddy then took me upstairs and I got ready for bed. Mommy, Daddy and me had a group hug and kisses. I rubbed Mommy’s head again, I like that! Till tomorrow, Good Night Everyone! God Bless You All! I think Brooke said it, finally getting caught up. I have learned a lot over the last couple of weeks about computers, pictures and ohh that Facebook! I was very tired and drained today. I felt guilty for not going to work, but the time spent with family and Brooke is priceless as we prepare for next week. I also just did not want to face people today. I again just want to thank so many people out there again for allowing this to happen. Our family just has so much to be thankful for during this period in our lives. A special thanks to Eric Morris for all the hours he has unselfishly given to TEAM BROOKE. To everyone the awareness we have raised during these bad economic times of what is important and the fight that we have to fight against Cancer! To the Relay for life team Fight the Beast, Good Luck! May we all someday see the efforts to stomp out Cancer. I am now signing off of which was another joyous day with Brooke! Rob Friday, January 30, 2009 10:32 PM A Day at the Movies Hi everybody, it’s me. I slept in bed again with Mommy and Daddy. I think I just feel safe there, when I wake up in the middle of the night I just want to see them because they were right bye my bed for almost two weeks when I was in the hospital. Today is Friday, I bet you can not guess what I had for breakfast? That’s right, pancakes. My Grand Pop Greg makes the best Mickey Mouse pancakes or what ever shape I want that day. Daddy went to work early today, but he was still late to work. I love my Daddy, he is so silly. I also, got a big surprise in the morning; Mommy did not have any hair, silly Mommy. I love rubbing it. I gave Mommy a big old kiss on her shaved head. I can not wait until our bandanas arrive we ordered. After breakfast I got ready to venture outside. Mommy was taking me to the movies. We figured there would not be too many people in the theater around 12PM. Mommy put a sheet over the seat and we split a big bucket of popcorn. I did want to share for some reason. We saw Hotel for Dogs. I started getting tired at the end and laid on Mommies lap. After the movie Mommy and I got to do a tradition that we have not done for a long time, we ordered Chick-fil-et thru the drive thru. I love their nuggets, they are the best! We always stop here for lunch when we are up north. We went home and Miss Liz stopped over and we played Princess Barbie’s on the Wii. I love Miss Liz when she is not giving shots. Miss Lisa also stopped bye with Allie to drop some stuff off from church and other things from other people. After all this I played the rest of the night with Grand Pop Greg and Grand Mom Millie, we were doing a lot of dancing. Mommy got some stuff done around the house. I went up and took a shower and played with that foam Elmo soap from Miss Liz. (Thank you Liz, before that baths or showers were impossible) I went to bed, but I miss my Daddy because he was still at work. Thank you to everyone for praying so much, because it has really worked. Again, it is such a blessing to have Brooke be able to have a normal day. Of course she has to do things in a limited way, but they are normal things she used to do. They just mean so much to Amy and I. I had a long day at work, and I think I overdid it. It was not physical, but just by the end emotional. It was the first time I spent some time in the restaurant and by the end of the night I was wiped. I want to go in and help my staff and see some people, but the talking and emotions really get to you after awhile. I do truly thank everyone out there and sorry, if it is like I am avoiding the place that I have spent the last 8 years of my life in 7 days a week between 10 to 15 hours a day. I did tell some people that the town of Smallsbury has made a lot of noise by everything they have done for Brooke down here. The nurses at CHOP have made the comment how’s our celebrity doing? Her Doctor, Dr. Maris has taken a liking to her. This is great, and besides money this is what you all as a community have done. Little old Salisbury has made an impression in Philly! That brings a tear to your eye as a parent and as a member of this community. Again thank you for your prayers and comments on her site. They are the fuel that power our days and nights! Rob Thursday, January 29, 2009 09:49 PM Surprise Visit Hi everybody, it’s Boowkie and today is Thursday. I had the best day. Of course I had pancakes to start my day. I played with Bailey and had fun with Mommy and Gran Pop Greg and Grand Mom Millie. Then I got a huge surprise. Mrs. Smith my teacher from Asbury stopped bye. I was so happy! She was just going to drop some stuff off, but stayed and went over what they went over in class this week. I got a book of We’re going on a Bear Hunt, made a bear mask and the best was I made a picture of myself for our class T-Shirt. I was so grateful for Mrs. Smith stopping bye. The rest of my day I watched some movies, I was tired out after Mrs. Smiths visit. Shortly after dinner, which was prepared by the Doyle family for us, my Daddy came home. He went to work today. My Daddy was going to play with me and put me to bed. My Mommy was going out tonight with her girlfriends to do something unbelievable. She was going to shave off all her hair, so we could be twins. I have the best Mommy in the whole world! She got home very late, shhhh don’t tell anyone. I played with Daddy and he got me ready for bed. He read me a Winnie the Pooh book. I played the stall game as long as I could, but Daddy caught on. It takes Daddy longer to catch on than Mommy. Maybe it was because Daddy could not see to well. The whole time in my room getting ready and during the story Daddy was always wiping tears out of his eyes. I said the Lord’s Prayer and Daddy turned out the lights. Everyone have a good night! Hi everyone. As I write this, the photos for this day have been up 24 hours before the journal entry. I was pretty sure they were self explanatory. It is such a breath of fresh air to watch our daughter playing and acting like a 4 year old again. Then the times when she has to have her tubes flushed remind us of how old she is now. She tells us how to go slow when flushing and remember to clamp it Mommy. The days start out easier, trying to go to work only if it is just in the office. The day is filled with joy and tears still. I can not explain when my eyes will fill with tears, but they do. It can be from a commercial, a toy, a picture or a moment but that is why we are humans, we have emotions. Brooke’s smile has returned over the last few days, which brings joy into our house. For a few days it was hard to get her to smile, but if you were her would you want to smile. I enjoyed spending time with her. This is so possible because of the dedicated staff I have working at MSI right now and they are extremely short staffed on the management end and tired. It is also because of all the support and fund raising from you all out there. Instead of having to worry right now of where every dollar is coming from, there is money there to help with some of the bills from you all. This is the most amount of time I have spent with my daughter and family since she was born, I was always at work. The Lord speaks to us in many ways. I just want to continue to say thank you to everyone out there keeping us in your thoughts and prayers. Rob Wednesday, January 28, 2009 02:46 AM A few days home Well, hi everyone. It’s me Brookie. I know you all are wondering what is going on with me. It has been a crazy week in our house, but hey when isn’t it. We had some family time, traveled to Philly and Daddy got a new lap top so Mommy could have his old one. This was all needed so everyone could keep in touch with everyone, paying bills, Daddy’s work, emails and keeping my website up to date for the rest of my treatment throughout the year. That’s why Daddy is behind, he has had a few glitches along the way. Looks like we are back in business now. Monday was the second morning I woke up in my own house. It was a good and bad morning. The bad is my hair is starting to really come out now, but Mommy has done a good job preparing me for this. The good news Ms. Liz brought my Bailey back, she got a clean bill of health. I have been eating ok and Mommy got to go out and run some errands. Grand pop Greg and Grand mom Millie have been helping out lots around the house. Daddy went into the office for a little bit. My fever seems to be down and I am having my moments, but it was a good day until the shot. Dr. Dave showed Ms. Liz how to do it and she does it a little better than those men Dr’s. I just get myself so worked up. We got thru that and I took a little nap and woke up and ate dinner. We all watched some TV and I went to bed at a decent time. All along the way I have been reading and catching up on journal entries from the CaringBridge site and now my own website, how cool! I have also, been reading cards and opening some stuff. I just love how everyone has been keeping me in their thoughts and prayers. Tuesday I woke up and ate breakfast. It is so nice to wake up and not get sick all the time and take lots of medicine. My hair is really falling out now, but I am still so cute. The weather is really cold and starting to snow. I really want to go outside and play in it. I have a snow outfit and everything. I will just give Mommy and Daddy the work over to achieve this. Daddy came home from work and I was playing with some mini snowmen that Ms. Liz had brought in and we put some food pieces on them and it was like real snowmen. Then we broke them apart and threw them at Bailey and she ate them. Then I figured out it was time for my shot. NEEDLE NEEDLE NEEDLE! I was just traumatized again. My legs are so sore. We got thru it and guess what? Mommy had to run to the Pharmacy and she dressed me up and I played in the snow for a few minutes. Later on we had dinner that Grand pop Greg and Grand mom Millie made. Mommy got a big relief today; the thermometer arrived just like what they use in the hospital. This is so important because if I get a temperature a few tenths of a degree can mean going in the hospital. Anything that cuts down stress for Mommy and Daddy is worth it! I watched some TV and had to go to bed early, because Daddy, Mommy and me had to go to Philly for clinic again. I hope this week goes better than last week. I again tried to get a little more caught up on everybody’s comments. I am just so lucky to have all of you out there praying for me everyday. Wednesday we all got up early and headed to Philly. The weather was really bad. Daddy was ok, he had his coffe and this week Mommy did not spill any on her leg. We got to clinic around 11AM and I played on the computer in the waiting area as we waited our turn. We went in fairly quickly and we started off on good news right away, I had gained some weight. We then went into the bad room, the exam room. I saw Dr. Weisner and he looked at me and the nurse took some blood and he went over a bunch of stuff with Mommy and Daddy about what was coming next week with my next round of Chemo. I did not want to hear what they were saying, I bet it involves medicine and ouchies for Brookie!! The blood work came back and guess what? It was the best day for everyone! I do not have to get any shot today, or until next week! All my counts were up and I could go home today. I think everyone was in shock, nobody said anything! All those prayers must be working! This was just the best day ever! We had to wait for some misc. things and then we would be on our way. Daddy went to grab me my Happy Meal, I just love the toy! I was worn out from stressing about being in that room, guess what? I fell asleep on Mommy in the play area. You know I was tired. We confirmed our next week appointment and got all our lab sheets and we were out of there. The weather was even worse coming home. It took a long time, but we were on our way home. We got home and everyone was just so happy! We ate another great dinner that was prepared for our family by another family. After long days this has really been a big help to Mommy and Daddy. After dinner, Mommy and me went up to the bedroom to have some girl time and lay in bed and watch a movie. It was great! Daddy surprised Mommy with some candles and scented oil, we had a good time. I did not sleep real well, and came in and slept with Mommy and Daddy. I was just fine after that. It was Mommy, Daddy, Bailey Dog and me all on the bed! Boy did I feel safe. For now it is very late and Daddy has to actually work at the restaurant in the morning, so he will finish this up later in the day. Hi everyone. What a week. Trying to get some things done, checking in at work, some new equipment to keep in touch and another trip to Philly. Amy and I were just so relieved after Brooke’s blood work came back on Wednesday. This was such an uplifting moment for us. This is what we all have been praying so hard for. Brooke to be getting stronger and us to catch our breath before the next round of treatments next week. It has been enjoyable spending time together and watching Brooke in the snow, even though it was short she sure did have fun. We continue to draw strength from everyone of you out there as well as Brooke. It is so nice to see that laugh more and more. Time to sign off for now, still have two more days to do. Monday, January 26, 2009 02:15 AM My new website A couple quick updates 1. Mr. Tony Weeg who designed the Market Street Inn Website has over the past week worked a lot of hours to design Brooke's own website. He has donated all of his time to keep TEAM BROOKE more informed of events, pictures and how Brooke is doing. We will of course keep both sites up to date with pictures and journal entries. To visit Brooke's new site please visit www.brookemulford.com Tony a big Hug & Kiss from Brooke! 2. A lot of people have asked about meals. In order to not waste food because of our not knowing when we will be home or not, Mrs. Chris Dorman is handeling organizing that. She will always be in contact with us to know when we will be home or not. I have checked with Chris and you can contact her by email at cdbsf@comcast.net or her cell phone @ 410.726.5745. Thank you all so much, we just do not want to end up with a bunch of food at one time and then waste it. Thank you all agian for supporting TEAM BROOKE! Monday, January 26, 2009 01:11 AM It was a Great Day walking! I just have to tell everyone out there, Thank you so much for “Beat It With Brooke Day”. I just had such a smile when my Daddy showed me the Proclamation from the City of Salisbury! I got up around 8AM today, I slept ok. It was a big night, because I still had a slight fever and it was the first time home for awhile. I wish I could see my puppy Bailey though. I watched some TV and then guess what? I ate pancakes for breakfast. Mommy started taking down some Christmas decorations and Daddy was still sleeping. When Daddy finally emerged I was in the playroom messing up what Mommy was trying to straighten up. Mommy finally sat down and tried to finish a puzzle of golden retrievers, because LuLu keeps stealing the pieces and dropping them around the house. I was playing with stickers and telling Mommy and Daddy where they all came from and when I got them. These were stickers from up to a year ago and just recently. (How can she remember that?) Daddy noticed something today, my hair. Mommy told Daddy what I had said earlier. I said, “it’s ok it was getting in my way anyway.” I will have lots of neat hats I bet. Daddy kissed me and told me he was going to a special walk for me today. I played with Mommy and Grandpa Greg and Grandma Millie. When Daddy came home he heard screaming and everyone was out in the living room and kitchen. I kicked everyone out of the downstairs bedroom. Dr. Dave (AKA Dog Walker), Dr. Jeff, Mommy, Grandpa Greg and Grandma Millie. They had just given me my ouchie shot and did a bandage change. My poor little body is so sore and bruised, please just stop. When Mommy and Daddy tried to come in and comfort me, I just closed my eyes and held my hands to my ears. I don’t want to hear anything about presents and stickers and beads. Daddy did show me a special card and prayer bear from a special buy named Adam and I started to calm down a bit. Then he showed me the Special Proclamation from the Mayor of Salisbury, I got a little grin on my face that I was someone special. My Aunt Jenn and Cousin Ally stopped bye to drop some stuff off for me. It was all good then because I got a Webkins Heart Frog. Frog means to me; Fully Rely On God! Aunt Jenn’s class had gotten me something and some cards, all the way from Fairfax VA. I then came out into the living room and Mommy entertained me for hours playing Disney Princesses on the Wii. We all ate another dinner together as a family and then Dr. Dave came in with a ice cream sundae from Baskin Robbins. Boy oh Boy, Dr. Dave is ok in my book again. I got a couple presents from Grandpa Greg and Grandma Millie, read some cards and heard some comments from my journal and it was time for bed. I was really tired, but I have not been getting sick lately and my rash is clearing up. I still have slight fever. I go to bed thankful for everyone out there pulling for me. Just a day to be proud of why we live in America and this place we call Delmarva. I also must say there were people who came from NJ, VA, DEL, PA and DC. A great big Hug to you all. A special thanks to Steve, Tina and Janet and all the sponsors and supporters of this special day to cheer on TEAM BROOKE! We are going to BEAT this thing and along the way raise awareness and help other people. To the Mayor, City Council, County Council, Girl Scouts (Very touching), children, dogs and to Reverend Patterson for leading a very touching prayer. Thank you all! Oh yea, DJ Flea for being the master of Ceremonies. I want to send out from my family also, all our prayers to the family Eric Emily (DJ Flea) was telling me about from down in Somerset County that was diagnosed with brain cancer and was going to Duke Medical Center. May God be with all of you. I would also like to at this time if everyone could take a moment and bow there heads and give a moment to honor a special person who passed away this week, who I truly admired. TOMMY CURTIS May the lord be with his family in this time of need also. As we move forward and take each day as it comes, please remember to tell the people that you love, you love them and do not take anything for granted. Love thy neighbor and in return they will love you back. The Mulford’s are truly blessed to be in such a community in this time of crisis. Thank you to everyone and God Bless you all. Sunday, January 25, 2009 11:15 PM Daily Journal I just have to tell everyone out there, Thank you so much for “Beat It With Brooke Day”. I just had such a smile when my Daddy showed me the Proclamation from the City of Salisbury! I got up around 8AM today, I slept ok. It was a big night, because I still had a slight fever and it was the first time home for awhile. I wish I could see my puppy Bailey though. I watched some TV and then guess what? I ate pancakes for breakfast. Mommy started taking down some Christmas decorations and Daddy was still sleeping. When Daddy finally emerged I was in the playroom messing up what Mommy was trying to straighten up. Mommy finally sat down and tried to finish a puzzle of golden retrievers, because LuLu keeps stealing the pieces and dropping them around the house. I was playing with stickers and telling Mommy and Daddy where they all came from and when I got them. These were stickers from up to a year ago and just recently. (How can she remember that?) Daddy noticed something today, my hair. Mommy told Daddy what I had said earlier. I said, “it’s ok it was getting in my way anyway.” I will have lots of neat hats I bet. Daddy kissed me and told me he was going to a special walk for me today. I played with Mommy and Grandpa Greg and Grandma Millie. When Daddy came home he heard screaming and everyone was out in the living room and kitchen. I kicked everyone out of the downstairs bedroom. Dr. Dave (AKA Dog Walker), Dr. Jeff, Mommy, Grandpa Greg and Grandma Millie. They had just given me my ouchie shot and did a bandage change. My poor little body is so sore and bruised, please just stop. When Mommy and Daddy tried to come in and comfort me, I just closed my eyes and held my hands to my ears. I don’t want to hear anything about presents and stickers and beads. Daddy did show me a special card and prayer bear from a special buy named Adam and I started to calm down a bit. Then he showed me the Special Proclamation from the Mayor of Salisbury, I got a little grin on my face that I was someone special. My Aunt Jenn and Cousin Ally stopped bye to drop some stuff off for me. It was all good then because I got a Webkins Heart Frog. Frog means to me; Fully Rely On God! Aunt Jenn’s class had gotten me something and some cards, all the way from Fairfax VA. I then came out into the living room and Mommy entertained me for hours playing Disney Princesses on the Wii. We all ate another dinner together as a family and then Dr. Dave came in with a ice cream sundae from Baskin Robbins. Boy oh Boy, Dr. Dave is ok in my book again. I got a couple presents from Grandpa Greg and Grandma Millie, read some cards and heard some comments from my journal and it was time for bed. I was really tired, but I have not been getting sick lately and my rash is clearing up. I still have slight fever. I go to bed thankful for everyone out there pulling for me. Just a day to be proud of why we live in America and this place we call Delmarva. I also must say there were people who came from NJ, VA, DEL, PA and DC. A great big Hug to you all. A special thanks to Steve, Tina and Janet and all the sponsors and supporters of this special day to cheer on TEAM BROOKE! We are going to BEAT this thing and along the way raise awareness and help other people. To the Mayor, City Council, County Council, Girl Scouts (Very touching), children, dogs and to Reverend Patterson for leading a very touching prayer. Thank you all! Oh yea, DJ Flea for being the master of Ceremonies. I want to send out from my family also, all our prayers to the family Eric Emily (DJ Flea) was telling me about from down in Somerset County that was diagnosed with brain cancer and was going to Duke Medical Center. May God be with all of you. I would also like to at this time if everyone could take a moment and bow there heads and give a moment to honor a special person who passed away this week, who I truly admired. TOMMY CURTIS May the lord be with his family in this time of need also. As we move forward and take each day as it comes, please remember to tell the people that you love, you love them and do not take anything for granted. Love thy neighbor and in return they will love you back. The Mulford’s are truly blessed to be in such a community in this time of crisis. Thank you to everyone and God Bless you all. Sunday, January 25, 2009 02:48 AM Beat it with Brooke walk is today! Well hello everyone! It has been a long time since I have let you all know what I have been up to. It has been a really long week for me and my family. My stay at home was very short. I am happy to say that I arrived home around 5PM Saturday. Since I woke up Tuesday AM I will try to fill you in on my week as quick as possible. Sometimes my Daddy gets long winded. I woke up Tuesday the 20th and got sick and was very itchy. I watched some cartoons and played with Bailey a bit. Nana came over to see me and I did not eat or drink a lot. To get out of the house I went for a ride with Nana and Mommy to pick up some medicine. Tuesday night was soccer night and I was doing really well later in the day and Mommy and Daddy were concerned about taking me, but I wanted what any 4 year old would want a chance to see my friends, I missed them all so bad. I put on my soccer gear and off we went. By the time I got there I had fallen asleep and when I went inside I was so tired I did not have the energy to get out of Mommy’s arms. Everyone said hi and I smiled the best I could, but I was to tired. I got home and ate some Sushi and went to bed. Wednesday I had to be up very early. Mommy and Daddy had to drive me to Philly for my first Clinic visit. The Dog Walkers came down and got Bailey Dog and we had Mickey D’s for breakfast. I did not get sick this morning. We all got to CHOP and I was playing in the playroom by 10:30AM. In the clinic we all saw some familiar faces. My clinic Dr. is Dr. Weisner, my clinic nurse; Daddy forgot her name and Dr. Maris. In the treatment room I did AWESOME!!! I got my bandage changed, got an ouchie and changed the caps on my tubies. I got some Beads of Courage. Everything was going really good. We waited around to get the results from blood work and this is when everything started going south, except us on our way back to Salisbury. I needed a blood transfusion. My white blood cell count was down as well as my platelets. About ¾’s thru the transfusion I got a fever and they had to stop. The doctors made the decision to admit me with all that going on. At least Mommy and Daddy had learned a few things and they had packed just in case they had to stay. Daddy was running all over the hospital for most of the day trying to get some medical bills straight. We got our room pretty quick, it was back on the same floor, just a different wing and the room was smaller. I ate some dinner and Daddy went to get a room for the night. Mommy and me went to bed early and Daddy had some trouble getting a room. By the time Daddy got a room he did not feel to well. All this going on and my Grandpa Greg and Grandma Millie arrived at our house in Salisbury from California to stay for awhile and no one was home to greet them. Thursday morning came around and I did not feel to well and Daddy was very sick. He called his Mommy and Nana came up to Philly along with Pop Pop Vince to take Daddy back to Salisbury. Daddy and I were very sad because we could not even say goodbye to each other. Grammy came to help Mommy for a little while during the day. I received another blood transfusion and I still had a slight fever, so as a precautionary measure I was to stay in the hospital again. I did get to see Ms. Sara and had fun with her. I did not have fun getting my daily ouchie shot! I also had to stay in my room, because I tested positive for Norovirus, a intestinal virus that can cause diarrhea, nausea, muscle aches and fever. This is probably what Daddy had. Daddy stopped bye the house really quickly and said, “Hi” to Grandpa Greg and Grandma Millie and grab some clothes. Daddy stayed at the Hampton Inn on the North side of town so he would not leave germs in the house. Mommy and me went to bed early again. Friday came and I woke up and I was having a good morning. The doctors still did not like my platelet count so I had another transfusion. This time it was just a platelet transfusion. The good news is I did not get a fever. The bad news was by the time I could get discharged it would be very late and with the virus I still had they decided to keep me overnight again. This short clinic visit has turned into a long visit in my opinion. I also had to get another daily ouchie shot of Neupogen. Other than that I had a good day Friday playing with Ms. Sara, Grammy, Uncle Johnny and Aunt Johanna. Ms. Sara made me my own official Child Life Specialist Badge. I am on staff at CHOP now! Uncle Johnny saved the day by picking Mommy up a new phone charger. Mommy had to keep calls short and was going to lose her only way to connect to the outside world. Daddy felt a lot better but Mommy and Daddy decided Daddy should spend another night at the Hampton Inn to keep the house safe. (Thank you so much Chuck, Dee, Mike, Cathy and the Staff) Daddy got a lot of rest, Grandpa Greg and Grandma Millie had the house to themselves again and Mommy has watched me nonstop since Wednesday night. Do I have the best Mommy in the world or what? Everyone went to bed with the hope that I can come home tomorrow. I really want to come home and see my house, my family and my puppy and kitty. Saturday, I wake up and eat a good breakfast according to Grammy. I still have the virus and my counts are still low but I can come home!!! I did have to get that ouchie shot again. I have so many band aides on my legs. You see my Rocky the Medical Dog, he has band aides everywhere. Mommy and I leave the hospital about 2PM. Daddy is all better and all is well. Right before I get home though I start not feeling very well. I get a slight fever and I go right by Grandpa Greg and Grandma Millie to my bedroom. Mommy is very nervous because with my condition a one degree difference in my temperature means going back to the hospital. The scary part is the digital thermostats are not as accurate as I need them to be. Mommy and Daddy ordered me one like they use in the hospital but it won’t be here until Tuesday AM. The Dog Walkers then stop bye and we get more bad news for the week. Bailey will be fine, but Bailey ate a rock and has a virus in her stomach. She had to see the Vet today on an emergency visit. Turns out she ate a rock and it is stuck, and until she passes it she can not see me, because her gas could be harmful to me. I told you all this has been a week! I start to feel a tad better and I go downstairs. I smile a little and lay on the couch. I then eat some wonderful chicken that the “Merts” had made for our meal Saturday night. I ate some cheese also and then I was very tired. I go to bed and wish everyone a very good day tomorrow for the “Beat It With Brooke Day Walk” at Daddy’s restaurant. I know so many people have worked very hard on putting this together along with all the other events. I am just so blessed by everyone out there praying for me and helping me. I wish I could be there tomorrow to see all the doggies that I hear are going to be there. Ruff Ruff! Brookie Hi everybody. Sorry for such a long entry. I thought I was going to make it short, but I have given a day by day update and did not want to lose the day by day journal I have started. This is a journey that someday Brooke might want to know a full account of how so many people touched her life. That’s the least I can do for what she is going thru. As you can tell it has not been an easy first week home. We prey that next week goes a lot better, because the week after that Brooke goes back for the second round of Chemo. We need her strong to do that. Amy desperately needs a couple days of Brooke being well. She has been so amazing so far. She is more of a rock than anyone could ever imagine. I did get sick this week. It all caught up to me; the nerves, stress, the weird hours, not being at work, not knowing, feeling helpless, no answers, little girl being so sick, crying, praying, cussing, and the list goes on. You get knocked down, you get back up. You read the guestbook, you look at events taking place for Brooke, you read a lot of scriptures that people have passed on that have helped them, you read of other peoples success stories, you read of other people’s ailments, you read poems of hope, you read of the disease Brooke has, you read of the treatment protocol, you read of the side affects and then you try and put it all together and you can’t! I find myself praying more than I ever have in my life and you pull from the prayers that everyone out there is doing and you ask the Lord to please hear them and help our little girl, she is so special, her Mommy and Daddy love her so much and she is there world! Please hear our prayers and make our little girl well. Again, we give thanks to everyone who has helped in all the events for Brooke. Please know that the most important thing we could ask for is your prayers. Also, to all the Mommies and Daddies out there let your children know first how much you love them and then how much Brooke loves all the special cards made by the children and the cards from her classes and classes she is not even in. These cards bring a grin to her face. Brooke and Amy are sorry they will not be able to attend the Walk tomorrow. I will attempt to be there in the beginning, but I do not know how I will hold up. So we will leave it at that. The Dog Walkers will be there with Bailey Dog and a lot of our family members will be there again to say Thank You as well. To all a good night and a better tomorrow! Rob Friday, January 23, 2009 04:40 PM In the Hampton Inn!? Hi everybody. I know it has been a few days and everyone is wondering what is going on. This is just a quick entry to inform everyone and I will write a more detailed explanation later tonight. We took Brooke up for her first clinic visit Wednesday and she had to have a blood transfusion. Before they could finish the transfusion Brooke got a fever and they had to stop. At this point they admitted her to the hospital. Later that evening I started getting really sick. I slept at Penn Towers because it was too late to get a room at the Ronald McDonald House. The next morning I was worse so my Mom and Stepfather Vince came up and took me back to Salisbury, where I am staying at the Hampton Inn, so I do not spread germs in our house. Brooke received another transfusion on Thursday and they kept her overnight for precautions. She has gotten a fever every time she has had a transfusion. Brooke also tested positive for Norovirus, a intestinal virus that can cause diarrhea, nausea, muscle aches and fever. This is probably what I had. Today Brooke had to have another transfusion, this time it was not a blood transfusion but a platelet transfusion. After tonight if her platelets come up a little bit, no fever, or signs from the Norovirus then she could be discharged to come home tomorrow. Please give a big prayer for this to happen and an extra one for Amy who has been with her 24-7 for 2 ½ days without any help from me. Tuesday, January 20, 2009 12:51 AM Things are BUSY Hi everyone. It has been 2 days since my last words.They have been very busy for me and my family. It has been a long time since I have been in my home. I still have all my Christmas presents under our tree. Sunday morning I woke up around 8AM after falling asleep Saturday night around 6PM and sleeping thru the night.I am still very groggy. I am taking things for nausea and itching. I have developed a very bad rash and I itch all the time. I am not hungry at all and drinking very little. My Mommy and Daddy are concerned this might delay my leaving the hospital. I then put everyone thru a ruff hour and a half. I cried and screamed for all this time, because I did not want to have anyone touch my tubies to seal them up so I could take a bath. After wearing my nurse, Mommy and Daddy out I felt and smelled a lot better. By the way Amanda my nurse is a saint! I just went down to the playroom for awhile with Grammy so Mommy and Daddy could pack in the hopes we could go home. I came back to the room because I had to eat and drink something if I was going to go home. I did drink and eat ½ a tuna fish sandwich. The Eagles made me hungry with anxiety. They made the game exciting, but those Cardinals were too much. The doctor finally gave his ok around 4PM for me to go home. Mommy and Daddy looked scared to death. They were running around trying to pack, get prescriptions filled, last minute doctor instructions and look like they knew what they were doing. They did stop to look at pictures and tell me about Brooke Day back at Daddy's restaurant. They were so proud of staff, volunteers, family members and everyone back home they actually looked reenergized and got me ready to go. I just want to thank everyone for that, you guys kept Mommy and Daddy from losing it. We were on the road and arrived home around 8PM. Boy was I surprised when we turned down one of the roads to our house, Upper Ferry Road and saw this big banner for "Beat It With Brooke", this walk to help me next weekend. Mommy and Daddy stopped the car and just were so happy and sad at the same time, boy adults are confusing!!! Aunt Kelly was at our house waiting for us to stay overnight to help ease Mommies mind and since she is a nurse practitioner it was a good call. Mr. Greg came over to help Daddy bring everything in. The new pictures tell the story. It was so nice to be home. When I went to bed I was out cold, except that itching. Monday morning I woke up and got sick. My rash was really bad. I took my medicines and stated to feel a little better. I was happy to be home, but I was really just blagh all day. I am not used to being home yet. I want to go back to school and do things I normally do. I sense things are a little different though. The nurse who was supposed to show up to help Mommy today never did. Dr. Dave to the rescue, he came down and made sure Mommy did ok. The "Dog Walkers" do everything. Daddy went to his office today to catch up on paperwork and then was buying some supplies. It was nice tonight because Daddy was home for dinner.We ate as a family, we did not do that much in the past. Our neighbors made us a great dinner! Can you believe they made us salmon, my favorite. After trying to delay going to bed, I finally went. I hope this itching gets a little better tomorrow, or we are going to have to go back to CHOP a day earlier. Thank You all for all the prayers. Please keep them coming, I still have a long road to go! Hi everyone! What a 48 hours. Leave hospital, return home, return to work; kind of and be at home for dinner. Amy and I still do not know what day of the week it is, the date and time schedule. Returning home was such a rush of emotions. Happy to see the neighborhood, our house, the animals but sad to see the presents still under the Christmas tree reminding us how our holiday season was turned upside down.We are home until maybe Wednesday, but could have to leave Tuesday to go back to Philly for Brook's clinic.In this short time we have to get so many things straight. Bags unpacked to be packed again. Our Hospital ER squared away with protocol for Brooke, House squared away for us taking care of Brooke, insurance matters and trying to check in at work. This is where I must say thanks so much for everyone that has helped us in so many ways. From the prayers, errands people have run for us, meals, cleaning our house, fundraising efforts, taking care of animals, etc........! I am going to sign off for right now. I just want to say Amy and I are just so touched and want to personally thank everyone, but we are finding out that is going to be so hard to do. So many people have just done so much for our family, God Bless Everyone. Monday, January 19, 2009 11:32 PM Thank you EVERYONE! We just wanted to take a minute and tell EVERYONE that has been praying, thinking about, volunteering, donated and helping us Amy, myself and our families are forever grateful. A special THANK YOU to everyone associated with the events of this past weekend. Just truly touching and amazing. We arrived home around 8PM Sunday night. The prayers are working! Sunday, January 18, 2009 01:46 AM Everybody's Tired! Hi everybody, it's me Brookie or to some of you Bwookie. The last couple of days have been very tiring and Mommy and Daddy have been very tired as well. I will fill you in about Friday and close out with Saturday.The chemo (at first I got excited because I thought it was Keno. A game that you can win money at my Daddy's bar) has made me get sick a lot and the medicine they give me to make me feel better makes me tired. I have not been eating a lot lately, pancakes are not even appealing right now. Friday I had a neat day. I had my pictures taken with Mommy, Daddy and Grammy by a group called Flashes of hope and I got to meet the Phillie Phanatic. Mommy and Daddy were so jealous because they missed that because they were at another class getting ready for me to come home. I had another test, it was a ECO Gram. I did not like it and cried. I am just so sick of tests and I just do not like people touching me anymore. Later my Uncle Dave, Aunt Brenda, cousin Stephanie and cousin Juliann came to visit. My crazy Uncle Johnny and Aunt Johanna also came. My Aunt Johanna cut my hair short, so I get ready for maybe having very little hair at all. Everyone left pretty early, because I get so tired. I almost fell out of the chair getting my haircut, I fell asleep. (I heard my Daddy does this when he gets his haircut, silly Daddy he is not sick) I played a little Nintendo, my doggie and kitty are pretty well trained. I also saw some new pictures of my Bailey. My mommy reads me the notes from Bailey everyday. Those Dog Walker people are really special. I miss my home and my animals so much.I am sooo excited to come home, I think Mommy and Daddy are a little scared. We then took time to talk about what everyone was doing back home for me, guestbook entries, new jokes and said some prayers.Just a great BIG KISS to everyone who was outside in the cold to support me. Daddy and Mommy talked about the Bonfire all day! A big big thank you to all! My Daddy and Mommy wanted me to say a special thank you to Mr. Doug Marshall and Ms. Christal Marshall. After falling asleep for awhile, I was up for awhile getting sick. This medicine is rough stuff. This was not a happy beginning to my Saturday. I then went back to sleep, but woke up again to being sick. I now can not tolerate the smell of pancakes. I ate very little and have not been drinking much. My nutritionist's Beth is a little concearned. I started feeling a little better after some more medicine and I had a surprise visit from Dr. Jeff's Niece Ms. Beth, Mr. Kevin, Colin and Gracie. They were visiting some other people in a hospital near bye and stopped in to wish me well. That was so nice. I also wanted to say thank you for all the mail and nice things I have received over the past couple of days.The prayers have kept increasing as well, that is just so great. I have prayers from everywhere! My mommy and Daddy tell me that I am wrapped in a blanket from God and right now I feel very warm. My Grammy was here today as well as My Uncle Bruce, Aunt Cheryl and my favorite cousin Cassidy. I have such a big smile when she plays with me. I also have a big smile when Ms. Sara walks in the room, she always has something fun for me. Today I added a couple of new beads to my necklace. Then we made a beads of courage necklace for Rocky Dog, because he has been thru so much these last couple of weeks too. As the day went on, I started getting a rash behind my ear and it spread. I was real itchy. They gave me Benadryl on top of my other medicine and I have been asleep since around 6PM. I hope I can still come home, but this getting sick, not eating and drinking, not being able to get this medicine because Monday is a holiday, and now a slight fever is iffy. Well I am sapped again; please continue your prayers for me. Brooke HI everyone. Sorry for no daily update. As you can tell our schedules are really messed up now. I have to again just THANK EVERYONE for all the hard work and support back home for TEAM BROOKE! Just a truly amazing community coming together for a cause. I think over the last two weeks I have cried more than my entire life and not all of it bad. We as parents are just so touched for the love and support our little girl has received. A special GOOD LUCK to the EMPLOYEES of MSI tomorrow, I understand there is quite a few reservations for Brooke Day! Well, as Brooke told you for the most part the days are better. There is a lot less Ouchies but she has been sick. There is a lot of questions marks about when we are coming home. We are still gearing up for tomorrow.She wants to see that puppy. It will be a short stay.We have to be back up here Wednesday for clinic. Amy and I are excited and scared at the same time. We are scared to leave the security of the hospital. There is just so many things that can happen. Things that we used to overlook now can't be. She will be at risk for so many things that before this we did not have to worry about. A big thanks to everyone who has gotten our house ready to come home too! Again, just touched by all the people supporting our family and little Angel. The messages and prayers we read about keep us going.When Amy and I need strength we are always sitting down and reading everybody's messages. As everyone heads to church tomorrow please say an extra prayer that as parents Amy and I do all we can when we bring our daughter home and away from the security of the hospital. Again from the bottom of our hearts, thank you to everyone who has helped and prayed for our little girl. The love and support is more than any of us could ever have imagined. Rob Friday, January 16, 2009 03:19 AM Some FAQ's To answer some frequently asked questions going on back home. There is a website being developed that will be up very soon. It will be www.brooke http://www.brookemulford.com This site will have lots more pictures, daily updates, calendar of events, donation info, list of donors, notes from Brooke, etc. For now there is 3 ways to do donations: 1. "The United Way Brooke Mulford Fund" Please visit www.unitedway4us.org http://www.unitedway4us.org Please make sure your contribution is clearly marked "The United Way Brooke Mulford Fund" This is a registered 501(C) nonprofit organization (FID # 52-6016589) 2. "Brooke Mulford Foundation" You can either stop by any branch of Bank Of Delmarva or mail to Bank Of Delmarva Attn: Michele Thomas 2245 Northwood Dr Salisbury, MD 21801 3. Or simply stop by The Market Street Inn and leave a donation and to the attention of Danielle Murray Financial assistance, as well as your thoughts and prayers, are greatly appreciated! I hope this might answer some questions that are frequently being asked. Friday, January 16, 2009 02:34 AM Good nights sleep! Today I woke up around 9AM. I had a good nights sleep and of course I had my pancakes for breakfast.My Nana and Grammy came to visit and help out this morning. My Mommy and Daddy had a couple of meetings today. My Nana said, "the people at the Ronald Mcdonald house are so nice and it made her day sooo much easier." I continue to have to take a lot of fluids. I had a fun morning playing with everything with Nana and Grammy. Just when everything was going good, they put this stuff called Heprun(SP) in my tubbies and they dispensed it to fast and I could taste it in my mouth, that was YUCKIE! It still was not as bad as Ouchies. I finished my birdhouse I painted and heard about more comments from everyone. I again prayed and thanked Jesus for everybody thinking about me. I also am a comedian now, thanks to a joke I heard off my website. How do you make a tissue dance? You put a little bogie in it. I told that joke all day. After lunch I got ready to go to a bone scan test and began my third round of tratments. I had to lay very still again for my bone scan test. I watched Cars with my Mommy and Daddy and did it again. The Tech again could not believe I was 4 years old, he asked if I was 10 years old? When I arrived back to the room, I had some company. Mr. Eric and Ms. Juley were there. They brought some stuff for Daddy. They brought a copy of my flyer for Brooke Day at Daddy's restaurant, that is on display on the door to my room, a copy of yesterday's paper, which I stared at for awhile, a homemade Smith Island Cake and some special get well gifts for me that held sentimental value to Ms. Juley and her daughter. I was so thankful for there efforts and everybody's efforts everywhere. Daddy gave the cake to the staff at shift change so everyone was introduced the official Dessert of the State of Maryland that everyone worked so hard on getting passed last year. They all loved it! They also got exposed to Daddy's restaurant this way. We now have fans of the Smith Island Cake and Market Street Inn! I then put on my Eagles Jersey for the rest of the day to get the sprit moving for this weekend's big game! They call me a good luck charm! We then had dinner that my Aunt Johanna made for Mommy and Daddy and boy was a home cooked meal good! A little later Ms. Jean Marie came bye to check on us. She is a nurse over atUniversity of Penn who worked for my Daddy at the Royal Exchange Pub/Flying Club. He was very happy to see her, he had not seen her for a long time. After that I got a very special phone call from my buddy Grayson.I was so happy and sad at the same time. We talked about being able to play again. I also learned some tricks on taking meds from Trace. Then we watched Space Chimps as a family, but my Daddy fell asleep. I had a really good day all in all. Time for bed, good night. Well, it was a nice day. Brooke had a relatively good day, which made it nice for her and Mommy and Daddy.Amy and I had a class today on how to give Brooke her needle every day. This is a tuff event on a parent to give your child a needle. It was great to see Eric and Juley and get copies of everything going on at home. It is truly amazing of the series of events that are going on. I was blown away to see the list of people helping tomorrow night on SBYNEWS.com!!! Joe thanks so much for putting that together, It made me just stare in disbelief! To all people praying and supporting Brooke, GOD BLESS EVERYONE! TEAM BROOKE is a force to be reckoned with. On more good news for the day, if things continue to go well with no setbacks we might get to head home late Sunday night or Monday. We would be home for around 13 days and then back to CHOP for 7 days. We met with one of Brooke's Drs. Again, Dr. Maris and he is well respected and he really made Amy and I feel good about our choices and the future of Brooke. Brooke's nurse today was named Linda, and she was a nurse that cared for Alex of Alex's Lemonade. She was an amazing lady! Also, I have to comment that the volunteer's for the Ronald McDonald house are very special people. Truly a great organization and a God's send to countless families! I am going to sign off for now and do some other work, but good luck to everyone for the Bon Fire! For all that know me, I hate to miss a good party and boy do you guys have one planned. Right next to the State Police Barracks at that! Ernie you better watch out for everybody! Rob Thursday, January 15, 2009 12:55 AM Salisbury has a large heart! My family is loving the fact that we call Salisbury or Smallsbury our home, because it is not small at all. It is home to the biggest hearted people in the world!!! I thought it would be good to throw this quote in that my Daddy used in his Facebook, I loved it. I slept ok, except the nurses always having to check on me even more now because I have begun my treatments. Mommy did not sleep well last night. Daddy was a champ, he did not hear anything...slept thru it all.I woke up around 8AM and had French Toast sticks for breakfast, I like the pancakes better. I then got a bath because you guessed it, I was pooh tinky. My favorite person came in today, Ms. Sara from Child Life Services and we talked about adding to my beads of courage later today. I think my Daddy forgot to mention this before. There was a girl like me who had cancer and she came up with beads of courage. You can get beads for all the different things you have to go thru while you're going thru treatments. I have gotten a lot of beads already. My necklace makes me feel really good.My Daddy told me about the paper this morning, I remember that picture. Mr. Joe took it outside of Crown after a kickers practice in the morning. I can not wait to get back with my buddies on Tuesday night at Crown. I MISS YOU ALL! Speaking of missing, I was really really sad today. I petted Bailey's picture, but then I just stared at it for about 5 minutes. It brought a tear to my Daddy's face. Oh Bailey, you have gotten so big! My Grammy came in and I got a big smile. I also love hearing about all messages my friends from school leave me. My Mommy and Daddy read them to me everyday. I also love all the messages from my family and people I do not even know. This gives me the strength to carry on and keep on smiling. Thank you Lord for all these people to give me my strength. My day quickly changed. I had to go to the treatment room to have my bandage changed. I screamed and kicked and made myself so upset. It was so painful, because my Med Comp Line was so sore from that second surgery. After about an hour we finally got it changed. I was tired and my second round of treatment began. I went to the playroom, but not for long I was tired. After a little rest Ms. Sara returned and we added beads to my beads of courage necklace. I felt a little better after that. My Nana then came to see me also. About this time I got to go for a wagon ride with Mommy to another test. I had to go to hearing test. As soon as I got back then I had to have a EKG, they put these stickers and wires all over me. Nana and my Daddy went somewhere, but then my Pop Pop and Mom Mom Mulford showed up to help out. I started getting very very tired. I lay down and took a long nap. When I started to wake up I was very cranky and not feeling well. My Daddy was back and my Uncle Johnny and Aunt Johanna were in the room. I just cried and cried and I got ready for bed. I ate some of my dinner. I have just been eating plain bsketti noodles lately. After my medicines, I am not hungry. I watched Clifford again while my Mommy and Daddy were being taught how to change bandages on a dummy called Chester. You should have seen that. Since my day was a long hard one, my Mommy told me she had a very special present for me that a lot of people pitched in for that I could open. I opened it and it was a Nintendo DS. Oh Boy!The first game I played was a game of training a reality puppy. Guess what I named my puppy I was training???? Well, I am getting tired and Daddy just got me a late night snack of Lemon Ice. Mommy got my prayer penny out and I prayed. This makes my Mommy and Daddy so happy. Good night. Wow, what a day. I have to say it was an emotional roller coaster. I went to bed early, but could not find the energy to get going. I was just not dealing with everything well. Then, I saw about the front of the paper and read the messages and emails. It got me going and gave me the strength to keep focused. Amy and I just continue to be amazed. The term TEAM BROOKE says it all!!! Our journey is full of ups and downs and at the end of the day it is a team effort. I have to just give thanks for all that everyone is doing. I know everyone has jobs and families as well, so any time that you give it is taking from some other facet in your lives and that is what makes this even more special. I am hearing the weather is not going to be nice on Friday night. Please do not push the envelope and have people getting sick, remember this is a marathon not a sprint. I have heard and read some very touching things lately. Of bad comes good. Some people say that our little girl has brought a community together. In times like this of all the gloom, fighting in the world, crime, financial distress and disease; this is a sign from God that the outpouring is what has always mattered in the world and has always been there, love and caring. As it says in the Bible, love thy neighbor. I know I love my neighbors. This has changed our life's and priorities along with them. The support from home has helped get us bye. Now more than ever people need to believe more than ever in what was always in front of their face and does not require a membership or a lot of money: LOVE, FAITH and FAMILY. If other good can come from this horrible event, then GREAT! As stated before, our day was tuff. To watch your young daughter scream in pain and ask for you to stop it and you can not do anything is just horrible. Then you send your daughter for a hearing test to establish a base line, because this treatment causes hearing loss is just a crime. So, you can see why you need this support to get bye. The hope of beating this lies within a spirit that I have never known. That spirit is coming from everyone out there. I witnessed another magic moment today. When I left with my Mom today we went to the Ronald McDonald house to get a room for the night.Everyone there is a volunteer. Strangers taking strangers in at their worst times in their lives. Everyone was so nice; it was another blessing along the way. Of course I had an interest in the kitchen area and a volunteer told me that the meals are donated every night and if you wanted to donate and cook the meal for the night you would have to wait until about 3 months out! That is amazing! When I returned back to the room and prepared to wind down for the night, I read more messages and watched my daughter prey was just amazing. The roller coaster ride of emotions that happens each day is what this is, take one day at a time and this is a marathon not a sprint. I hope I did not go to far off the path tonight, our daughter is thru her second day of treatment and she is doing better than those first few days, which is great. I just want to share the emotions Amy and I go thru each day and you all know how important the prayers, your messages, and support are to us! To all of TEAM BROOKE'S supporters God Bless Each & Everyone Of You! Wednesday, January 14, 2009 04:20 PM Quick note to Team Brooke Just a quick note to Team Brooke. Just Posted yesterday events, I went to bed early and everyday is just a whirlwind, a blur of what happens, so time gets away so fast. I Just can not believe all the events planned so fast and the coverge. From WBOC's coverage last night and the Daily Times today. How moving. I also would like to comment, if all this just helps someone else going thru this horrible disease or alerts someone else to catch it earlier in a loved one than we all have helped our neighbor! Wednesday, January 14, 2009 04:19 PM Team Brooke is the Bomb! I had a ok nights sleep, last night (Monday Night). My day started by having a good breakfast of pancakes.The morning did have a bump in the road. I had to have my IV out from yesterday's surgery. Another big OUCHIE. Think it is more of all the pain from the last ones than this one. My Mom read the Curious George book, which helped a lot. My Aunt Alisyn came bye and I was happy to see her. She is such a good influence in my life and left me a prayer Shaw. My Nana and Grammy were in to visit as well today. It was then time for my first treatment. Thank goodness those new tubies work so well, things went a lot easier when the medicine had to go in. The treatments took about an hour and a half. I do have to go potty all the time, because of all the fluids they are giving me all the time.I did get tired as the day went on. Maybe it has to do with all the stuff I have to play with, no it is the medicine. My Aunt Marcy, RJ and Easton stopped bye with a special gift for me and a box of books for Child Services so other kids can enjoy. I then received a lot of packages that my Mommy went and picked up at the front desk. I received another prayer Shaw(See today's pictures), my Mommy and Daddy got a big basket of food, a real informative book about my disease and movie and other books, some crafts, a build a bear and other things. I then took a late afternoon nap. Mr. Brandon came bye and brought Mommy and Daddy a Philly Cheese steak and some pizza. They went to the McDonald room to work on some website stuff. I later awoke and ate bsketti again along with an Italian water ice. We all had a low key night. Mommy and Daddy were on and off the computer and we watched some movies. Last night I loved watching Clifford. We were all so surprised watching my story on WBOC back home. I also was just so touched by all the prayers and people that went to my church yesterday Maybe that's why yesterday went so well for me! Keep the prayers coming. I also want to take a minute and tell all of Daddy's employees and managers THANK YOU SO MUCH! Because of all of you, my Daddy can stay here and help Mommy take care of me and that means everything! Also, thank you for all the goodies again!To all my classmates, friends and supporters I blow you a big kiss. Brookie To everyone, a big hug. Sorry a day behind again, but went to bed early last night. Once you wake up you are on the go all day long. You peck away at the computer here and there. Yesterday was the best day Brooke had yet. All those prayers are doing magic! First and foremost thank you to everyone who has been praying and attended the prayer vigil at our church or any church that you attend or went too. I also just can not put into words the feeling Amy and I got after watching the story on WBOC! Everything going on at home is just so amazing. The power of faith is undeniable. TEAM BROOKE is the BOMB! As Brooke would do, pound it then blow it up!!! Well as I said earlier, "it has caught up with me and I have no energy to focus, so I am going to bed early for the first time in a long time. To everyone, God Bless You and a prayer goes out to you all for providing the support for Team Brooke. Tuesday, January 13, 2009 03:19 AM Nothing is easy! I know you all want to hear about my day. First I was glad my Daddy was back. Mommy and Grammy had a long night. My day was a rough one. We had a set back. When I awoke we were waiting to hear when we would go for the MRI. After a visit from a Dr. I told you about from before on my team I met him for the first time, Dr. Maris. He is no joke. He felt that the MRI was not necessary. One of the other ways to identify this disease besides not walking which happened to me, is the enlarged pupil or the eye becomes lazy. Remember this is a neurological cancer. No MRI was good, but that was the end of the good news for the day. The nurses again were having problems with my Med Comp Line (Central Line). The decision was made that they would have to remove the one I just had and replace it. There would be ouchies and the surgery again. It was now around 11AM and I have had nothing to eat or drink since around 9PM last night. I was very very thirsty and not vey happy. Daddy whipped out a gift from the Dog Walkers (Get it, Dog Walkers) it was a framed picture of Bailey. I petted it and looked at it for 10 minutes. I had a smile. Nana then came bye to be here for the day along with Grammy to help for my first day of treatment. Then as I started to get worked up again, Reverend Patterson walked in carrying a laundry basket of stuff. Oh my eyes lit up, no not for the presents, seeing Reverend Patterson. My Mommy and Daddy were so happy, they needed this right now.Most of the goodies were from the people in my neighborhood and some from the church. I really liked all the handmade cards, they are so special to me. I also received a prayer necklace that I put on and wore all day, except the surgery. Then a huge box showed up and it was a whole lot of stuff from Mommie's work, Health South. They sure know how to pack and I mean pack a box down there in Salisbury. After sorting thru most of the stuff I then did a very special thing that brought a tear to Mommy and Daddy. We all gathered hands and I recited the Lords Prayer all by myself in front of my Pastor. Reverend Patterson then lead us in prayer to ask for the Lord to be with us and watch over Brooke today. Reverend Patterson then had to leave and go to his next appointment in Baltimore. I walked downstairs with him and just thanked him for the support and for tomorrow as he leads the Prayer Vigil for Brooke. I know that it will be even more special, because at some point Grand Pa Greg will be doing a live feed from California in a prayer to the congregation of Trinity. Grand Pa Greg has really got a lot of people praying for me in California, some are even fasting.Truly an amazing day tomorrow. While down in the Lobby, Daddy' close friends from high school and college were waiting to come up and see me. Mr. Devin, Mr. Paul, Mr. Tom (He also owns a restaurant) and Mr. Mick. They came up and kept me occupied while I was starving to death and thirsty still. I got some more movies and some nice personalized things from their children. I scared Mr.Tom (See new pictures) with my scary face. Mommy the whole time was sewing and putting together a build a bear that I received. She did a great job. She is the bestest MOMMY in the whole world. It was good for Daddy to see his friends, but Daddy looked very tired as did Mommy. Everyone said there goodbyes as we waited and waited and waited for them to come and take me for surgery. Around 4PM they finally came, I was so hungry and thirsty. We arrived in the room to sedate me for my surgery, Mommy and Daddy just were so upset they had to do this again. They sedated me about have way and I got very very silly and I was biting my Daddy's hand. They wheeled me away and Mommy and Daddy had to wait.After about a 45 minute wait Mommy and Daddy came in to the room as I was waking up and it was nothing like last time. I was very upset and crying and screaming. Mommy and Daddy tried to comfort me, but I did not want them to touch me and I was kicking at them and I had an IV back in my hand again. Anastasia as your coming out of it is different for everybody, but none the less it was gut wrenching for Mommy. After about another 45 minutes I was being wheeled back to my room still not knowing if I was going to have my first treatment today. I had to go potty a lot today because of all the fluids from WALL-E. At around 6PM there was a free cooked meal in the Ronald McDonald room on our Floor. Mommy, Daddy and myself were starved. Mommy and Daddy ate that up very quickly and I waited for some Bsgetti. After Dinner Daddy took about an hour nap, more liked passed out! When Daddy woke up I wanted to play with Daddy and we had a tea party with a tea cup set I got today, but I told Daddy he could have coffee instead. We played and Mommy was trying to get the room organized. It has way a lot of stuff in it. They notified us there would be no treatment today. We will hopefully begin tomorrow. The rest of the night was ok and I was feeling ok. Daddy went to do what he does and Mommy and I watched a movie.Please pray for me tomorrow to have a better day than I did today. Love and Kisses Brookie! Well, I know you all wished us well and wanted to know how the day went, it was hard to see her go thru surgery again. Right now I will keep this short because I have not slept since I woke up Sunday morning. A couple naps in Greg's car and the nap tonight. Just another learning experience to reinforce that one day at a time and nothing will go as planned. The Cat Scan Sunday night made me feel like I was the most helpless individual in the world, because I was away from my little girl and wife in their time of need. A very draining 24 hours. Hopefully tomorrow is a little bit smoother.The things I am hearing that are going on for Brooke back home are a miracle in their own right. I will list on the site a calendar of the events I know about tomorrow. The lord has blessed us in a way I never would have imagined. Our community is so very special, as well as the support from outside of it. Special blessings to the angels that will take part in Brooke's Prayer Vigil tomorrow. God Bless you all. I would also like to say thank you so much for all the thoughts, prayers, visits and gifts for Brooke. I can not express enough the thanks for everything. I just would like to say for now, that remember this is going to be a long road for us and we will need your support months from now. I am asking for help now a little at a time, it's a big step for me and some good friends who have been thru this before have instructed me to ask and it is ok and you will need a meal just as much 6 months from now as today. I ask that as Amy and I prepare for these treatments that we need to limit visits and concentrate 200% on Brooke's care. It seems like every ½ hour there is either a Dr. or a nurse we see. We would also ask to hold gifts until we arrive at home or when she visits again for other treatments so she could enjoy them more. Our room is small and she has more than she could possible use right now. Please continue with the pictures, cards and words of encouragement.Please do not take anything the wrong way, our sincere appreciation can not be felt thru words. Thank you all so much. Rob, Amy & Brooke Tuesday, January 13, 2009 01:49 AM Thanks Greg! Just to keep things straight in this crazy ordeal, this is how my day went Sunday. I forgot to tell everyone I got one of those fruit icy pops from the nurses secret stash late Saturday night! Yummmy! We all went bed as a family around 12:30AM and I slept very good, but I had a rough morning. I kept having bad dreams where I said, "I don't need the toolbox, I don't need the toolbox". (The box that contains the needles when they draw blood) While I was sleeping my Mommy called the nurse, I had an irregular breathing pattern and a fever.They hooked me back up to WALL-E for some medicines. I had a really bad cough and when I woke up I had to go get a chest X-Ray. After awhile and sitting upright I managed to eat all my Mommies pancakes and started feeling better. Mr. Greg and Mr. Gary came to visit and were talking to my Daddy a lot. I was still in bed. Then all of Mommies' and mine mutual friends came for a visit. Ms. Tara and Mr. Jim (Grayson's parents), Ms. Sara (Will & Jack's Mommy), Ms. Margie (Jordan & Jackson's Mommy) and Ms. Laurie (Christian & Harrison's Mommy). I received lots of of stuff to open and use. I also received lots of cards & photos from my friends. I also received a very special couple of books from the Mull's. It was a Binder for me so Mommy and Daddy can keep everything straight in one location.They also gave a binder full of information about 16 chapters full of information about my disease. Mommy and Daddy were just so happy to receive those items. I saw new pictures of my puppy and kitty. I am really so sad that I can not see them. I now pet her on the computer screen or my Mommies' phone. She is sooo big! I found out why Mr. Greg and Mr. Gary were their.They were there to pick up my Daddy and run him toSalisbury. He had to take care of some things for work at his office. It was ok because Grammy came to spend the night with me & Mommy. We were going to have a girls night or a slumber party. Plus I don't think Daddy wanted to watch the Eagles, he was still upset from last weeks bashing of the Cowboys. I gave out a couple of hats and loli pops to some little fans that Dr. Jeff and family gave me yesterday. GO EAGLES!!! It was a lovely game and outcome. Just for the record my Daddy & Mommy LOVE all Philly teams. Daddy always watched the Phillies, what's with these Cowboys?Mommy used to babysit in high school for some of the Phillies players. She was in love with Mike Schmidt and was very good friends with Mike Ryan. We continue to be astonished with the amount of prayers happening around the country today. The entries in my journal make me feel so good, and I love the words of encouragement and stories. They give me hope to go forward. My Mommy and Daddy read them to me & I can tell they are moved, because I can see it in their faces and the water in their eyes. I prayed again today with my prayer penny. God bless everyone. Night time came and I felt fine, but Mommy and Grammy were concerned. One of my pupils was noticeably larger than the other. They took me off for a CAT scan around 10PM. Mommy called Daddy and he was in Salisbury and deeply upset. Mommy and Grammy did a great job holding it together with Daddy out of town. After the scan nothing turned up, but they were going to schedule an MRI in the morning. All this before my first Chemo therapy treatment. I did not eat much the rest of the day and was tired and cranky. It was a very bad night, I did not sleep much, which means Grammy and Mommy did not either. I think all the visitors are starting to wear me out, I know Daddy has some friends coming tomorrow, but after that I think Mommy and Daddy would like to limit the visitors so we can all concentrate on my care. There is a lot of decisions to be made and they need to understand my treatments. (Please call ahead of time and understand we love all the support and cherish you all, but as we have been told this is a marathon and not a sprint. We are starting to feel drained and we need to give Brooke our undivided attention) Hi to all. I apologize to all who check in to get the daily updates. As I write this for yesterday I am a day behind. Today was another day with an up and down day. The first time I was not around and something happened. I thought my insides were going to come up. The shame, guilt and horror consumed me. I left around 3PM and had some end of year stuff, payroll and home matters. I arrived around dark time to do as much as I could without running into to many people. I worked until 4AM, took a shower and Greg Herling ran me back up to Philly so I could be there first thing. This is why I had no time for an entry. As soon as I arrived back the day started right away and just now do I have some time. 2 trips in 12 hours, Thanks Greg. I did get to spend some time with Bailey and LuLu, it was wonderful!!! Thanks to Liz and Dr. Dave for doing such a great job. Bailey, has her own Face Book page. At least I beat the dog by a day with my page. Lets hope tomorrow goes better. To all the Prayers that were said today at all the services around the country, Amy and my sincere gratitude! May the prayers be heard and tomorrow go well. Sunday, January 11, 2009 08:13 AM Friends and more friends Hello everybody. My Daddy went to bed last night, so he is getting a late start to telling you what my day was like yesterday. I slept really good last night. I woke up in the morning and ordered French Toast, ate a big breakfast and went right to the playroom. The whole time Daddy never woke up, I don't think he went to bed to very very late. Mommy and me were having so much fun in the playroom as you can see from some new pictures. As my Daddy was waking up some good friends of my parents came to visit, Dr. Jeff, Ms. Pam, and their children Jordan, Caleb, Evan, and Bradon. We visited in the Ronald McDonald Room that is located on our floor. Today was a relatively a good day, lots of visitors. My Nana and Aunt Jen came and got my Daddy his coffee (He misses his Rise Up Coffee). Grand Mom Barbra and Aunt Marlene also stopped bye before Grand Mom had to fly back to Florida. Ms. Chris and Ms. Sherry came with some special stuff. Ms. Chris brought some stuff from my classmates at SCS and Ms. Sherry brought a special prayer penny from my buddy Gabe. This was amazing, it was the first time I have said my prayers since I have been here. Mommy, Daddy and me hold hands with the penny and pray. I was doing good, but I am having a lot of trouble with my central line. One side is constantly clogged. So with all the flushing, there is a lot of pulling on it that gives me many many ouchies. It was a long hour of getting things flushed. I ate a little lunch and was tired, but kept going. Mommy and Daddy met with another new Doctor, Dr. Hogarty.After this meeting me and Daddy went to the playroom.We had an amazing time playing. Then we had to get ready for going to the treatment room to change my dressing over my incision for the central line. I got a wagon ride there and I got a wonderful book from my Aunt Alice and Uncle Mickey, Curious George goes to the hospital. Mommy read it to me as they changed the dressing. We also all wore masks and I got a special Disney mask, that was really cool. It hurt a lot pulling the bandage off, but I made it. After all this was finished I headed back to the playroom with Daddy. Later on I was back in the room and getting very tired. My Uncle Johnny and Aunt Johanna kept me laughing and Grammy along with Pop Pop Dave kept me comforted. A little later everyone left, but my Pop Pop and Mom Mom Mulford stopped bye to visit. I then started to feel weak and I had to have a blood transfusion and I got my self so worked up again with the fear of ouchies and no fun for Brookie. However, I had this best nurse in the whole world Ms. Teressa. She gave me a tube set like mine and we did the procedure on my stuffed Rocky dog. He had a mask on, a bandage around the tubes and we flushed his lines. Then we did it on me and it went a lot better. She brought me my own box of Disney masks and I have a little medical kit with all the bandages and tubes, so we perform the procedures on Rocky Dog first then me. After all this I was tired, and went to bed and watched Kung Fu Panda with Mommy and went to bed. Hi to everyone. All in all we had a good day today. I guess it will be hard to have a whole day that goes well. As we are fully understanding now it is one day at a time and enjoy every minute you can. I can say that goes for everyone, take nothing for granted and I was the hardest person in the world to convince of that. I hear about lots of stuff that our community is doing for Brooke and Amy and I simply can not believe the out pouring of love, prayers and support. Earlier Brooke stated we met with a new Dr. on Brooke's team and Dr. Hogarty was very informative and helpful along our journey. At this particular time we are so touched by the hand of God and at the same time saying, "Why Brooke?" We will continue to deal with this question and question our faith, but because of the Love of all of you out there it keeps our faith strong and grounded and to deal with the task at hand GETTING BROOKE BETTER!!!! Please pray for us tomorrow at where ever you worship or think of us no matter where you are or believe in. The sprit in the air is a powerful message for Brooke to get better! Thank you all so much and God Bless you all! Saturday, January 10, 2009 03:12 AM Lots of family showing up I am truly blessed! My heart is full of hope and faith is behind me. May the lord bless all of you who are praying for me and giving me the strength to be full of hope. My Daddy has been really busy and he has been delayed in his relaying of my message to everyone out there the last two days, not to mention some technical difficulties...poor Daddy. Wow, how do I begin today? I went to bed around 1:30 AM and slept until 9AM. I slept thru the night and the nurse came in and did things to my tubes twice thru the night. They are better than that thing in my hand. When I woke up I was hungry! I first had to go have an X-RAY, but they took me there in a wagon ride. I was so happy to leave the room, because I am waiting for a test result to come back so I can leave the room and play in the playroom. I feel better and I have been so good I don't understand why I can't play in the playroom? When I got back to the room I had a big pancake breakfast, yummy. Then a package arrived. Open it Mommy. The package contained some goodies, but it had something that gave me the biggest smile I have had in a long time. It was a big picture of my SCS classmates. You can see a picture on the photo section of it. Daddy figured something out today! My Grand Mom Barbra came in who flew all the way up fromFlorida the day before along with my Aunt Marlene. It was so good to see them. My Aunt Jen and Nana came in a few moments later. We all played with all those things I received from the day before. Grammy came in a little later. Mommy and Daddy had time to talk to some people and take showers, they were poo tinky! A nurse came in to put something in my tubes and I was a little worried, but it ended up being ok. I then learned I needed to take a bath today, Mommy and Daddy called me poo tinky. I was tired and dozed off for a nap, I wonder if I will get away with this so I do not have to take a bath? When I awoke there was lots of Daddy's friends there. Daddy looked so happy. It was Mr. Dan, Mr. John and Mr. Brandon. They brought Daddy a camera, showed him how to use his new email address, his face book page and get on an alumni page of a place called The Royal Exchange Pub / Flying Club. I think Daddy was a bad boy when he was there, they told lots of stories. It was just a good day to have some fun, because there were no needles or tests. I was eating all day long. I ate dinner and lots of snacks. I still want to go to the playroom Mommy. Then My Uncle Bruce, Aunt Cheryl, Cousin Brian and Cousin Cassidy came in, YEAH! I love my two Cousins SOOO much. We played and I was walking around. Then these people came into the room and shortly later my Mommy, Daddy, Grammy and Nana were gone for a very long time, I am very concerned. I had fun with everyone playing though. When everyone came back, they all looked so drained and not very happy, but they perked right up when I was laughing and having a good time. Then the nurse came bye and ripped this sign down on my door and threw it! I ran out into the hallway where my Daddy was on the phone with the biggest smile I could have and said, "look Daddy I am out here, do want me to get you some coffee?" I then went to the playroom and took a wagon ride with my Daddy. As it got closer to bed time I told Mommy I love her and I wanted her to love on me. I dozed off around 12:30 looking forward to tomorrow. Good Night everyone and thank you to all for everything. I need all your prayers every day. I miss my puppy sooo much, did you see his picture? Hi everybody, it is slightly after 4AM. I must say I can't say how touched Amy and I are over the outpouring of Love, Prayers, Support and Visits to Brooke's website. This site for me is my therapy at the end of the day and if it generates just one more prayer then it is worth it no matter how tired I am. Amy and I are both originally from South Jersey, what exit? HA HA HA We now reside in Salisbury Maryland. For both of us when we arrived in Salisbury in 1987 for college (Salisbury State College) it was a big change for us. It was a lot smaller town then we were used to. The saying on the Eastern Shore is once you get the sand between your toes you can never leave. Well, from what the both of us have seen is there is no bigger town or community as the one our family resides in. We are both glad the sand is between our toes! God bless you all and keep the faith for us, because what I tell you next is our journey with the Lord and you all behind us.Tonight was the meeting with the doctors for the results of the tests. It is what we have been telling you all along. Stage 4 Neuroblastoma. It will still be another week before we know if she has the Myc-N amplified gene. We could still receive even more bad news. This is a very hard cancer to treat. The treatment is intense and it is about a 30% survival rate. All Amy and I ask is give Brooke a chance and a miracle and anything is possible. I am at a loss for words. Over the next 48 hours Amy and I have to do a lot of our own understanding of this cancer and make decisions that are in the best interest of our little baby girl no matter what has to be done. Her first treatment more than likely will be Monday. We are so grateful their will be a prayer vigil on Tuesday at our church, Trinity United Methodist Church from 8AM until 5PM I believe. The first couple rounds of treatment are pretty standard no matter where you go inside the group as the Doctors like to call it, whether it is Children's Hospital, St. Jude's, Hopkin's or Sloan Kettering. The later treatments is where things vary. The lord will guide us thru our decision. Brooke had a good day, praise the lord. Mommy and Daddy are in a place where words can not describe. Thank you again and a special thank you to our family who have helped this week and for bringing the joy you have brought to Brooke, especially tonight. To my other family, my fraternity brothers who came today and educated me in other forms of communication to reach more people for more prayers and made it happen, because they know I am one not to seek help often. To my brothers Phi Alpha! To my employees who have had to bear the brunt of extra work and take the helm of the ship and at the same time show Brooke love like she was there own. To Brooke's classmates and teachers you mean the world to our little girl. To colleagues past and present. To school mates past and present. To strangers, you are not strangers we are all of God's children. To friends, that is the shoulder we need to lean on. Brooke will give the fight, as will Mommy and Daddy and we ask you all to give the love, strength, prayers and support it will require for our little girl to be like every other little girl to live a normal life. God Bless, Amy and Rob. Friday, January 09, 2009 02:57 PM I LOVE the pretty flowers Hi everybody! Just wanted to past on to everybody a couple of notes. I love the pretty flowers I get and they make the room smell so good, but I am not allowed to have fresh flowers on this floor. On another note please pass on that my church Trinity United Methodist is having a prayer vigil on Tuesday January 13th from 8AM to 7PM for Brooke Mulford. I love my church so much. In closing for now because I am getting ready to dose off. Thank you so much for my Salisbury Christian Scool large picture from my classmates and care package. It brought the biggest smiles to my face. Daddy took a picture to hopefully load on my site. God bless everyone. Brookie FRIDAY, JANUARY 09, 2009 01:20 AM, EST Well hi everybody. I got some sleep last night. I went to sleep around 12:30AM, Mommy and Daddy were so happy. I of course had to be up very early. My eyes were not even open, but I knew the DVD player was off and I said, "Mommy hit play." Before I could even get up I was being wheeled off for my procedures. By 8AM I was being sedated for today. I was very tired and sore before the day even got started. I was very silly and giddy when they wheeled me away from Mommy and Daddy. About 2 hours later I was waking up and was very not with it. I was sooo tired, but I coughed when the nurse asked me to. After about an hour and I was making the machines meet the numbers that made the nurse happy I was wheeled back to my room. I lost that yucky thing in my arm, but gained this tube with two openings in it that comes out my right side. It is very big because I will have to take lots of medicine to make me well. I did get more stickers, but they are starting to lose their appeal. I was having a really bad time back in the room. There was comfort in knowing my Grammy and Aunt Johanna were here to visit me. My Grammy did some laundry for Mommy and Daddy, they were getting stinky. (Well Daddy has had 2 bad nights) Last night about 1:30AM I had the days info done and the site had a difficulty and it was lost. I re-typed it and about 3AM I lost the site again, needless to say I went to bed depressed. Have also lost info 2x today so far. Finally figured out to type this in a word document and copy and paste, Daddy is not that great with computers. So at least now I can finish this and not lose what I type. Thank you for being patient with me. I was getting sick a lot and Mommy and Daddy were having to change me a lot and a lot of sheets. I was sooo tired. I perked up a bit when my Aunt Marcy and Uncle Ron stopped bye to see me and drop off my Mommies birthday present. I got some cool stuff too and it is not even my birthday. My Mommy had a really hard birthday. This was short lived because the nurses came in and had things that looked like needles. I started screaming and sweating very badly. They said, "we can wait ten minutes." I said, "I want to wait a lot of minutes, with my lip sticking out." After 45 minutes Mommy and Daddy had to help to get the medicine and the flushing of the lines done. I wore myself out and mumbled that was not as bad as before. Then in my worst moment Ms. Danielle (Alex and Matthew's Mommy) and my Daddy's office manager came in to see me with a whole truck full of stuff. OH WOW! It was things that people had dropped off at the restaurant and two clothes baskets full of stuff for me and my parents from Daddy's employees. Just brought tears to everyone, not me I was excited! Everything from everybody was just amazing and totally not necessary. The card I got from my friends at MSI was the biggest card I have ever seen! It meant so much. At this time we all took a moment and pulled up the website to just be reminded of all the support that we have out there and all the people who have visited. Truly amazing. The prayers and support are still the most important thing I have going for me. THANK YOU EVERYONE! Thursday, January 08, 2009 12:53 AM Day 4 at CHOP My 4th day at CHOP and it was a busy day. When I finally woke up around 10AM, I watched movies until 4AM (HE HE HE). Mr. Greg came back in to wish me well and get my Daddy some coffee, he likes coffee. He stayed over to see me again. Shortly after that my Nana and Grammy came by, I love them so much! Then Mr. Jeff and Ms. Joanne came by to see me from Salisbury. The room really got crowded when Mommy had a mini college reunion with Ms. Kelly, Ms. Becky and Ms. Stephanie, I thought Ms. Stephanie was going to have a baby any minute. Later in the day my Mom Mom and Pop Pop Mulford stopped by, I got to see them just a couple days later. I was having a fun day. Got more balloons, some snacks and stuffed animals (My favorite was a stuffed labador puppy, it reminded me of Bailey). I also played on the Disney Clubhouse website on the computer in our room, I really really like all the games. I started to get a little tired and sore, so I got back in my bed. I met lots of new nurses on my new floor today, they are all so nice. I then had to get ready for my MIBG Scan, this is really no fun for me! When I got to the sedation area I had some really good news, because I did so good yesterday they were going to let me try to do the scan without being sedated. I will have to be still for 45 minutes, this will be tough. If I do it I will get lots of stickers. To be ready in case I moved and they would have to sedate me they had to flush my IV line and it was OUCHIE! After that while we were waiting I had the best time with my favorite person on the 3rd floor. She is Sara the Child Life Specialist. She was blowing bubbles and I was laughing and kicking them. Mommy and Daddy were talking to a lot of different people. When the time came I went into this room with a very very big machine. I picked out the Fox and the Hound to watch. The first part was very scary, I had to lay still and this machine was going to take a picture of my face for 15 minutes and it was only 6 inches from my face. I did it! Hi Fives from everybody, I cut a deal and if I did the rest the same way I would get a lot of stickers from Sara. (She did not know about the 6 stickers from the nurse) I was doing really really well and with about 14 minutes left my knee was hurting very badly and I moved it and the nurse quickly taped it down and we all held our breath that the Dr. would say it was OK. Well he said it was OK! I got a lot of stickers and was able to spend a lot of time with everyone, because I did not have to come out of sedation. They asked me if I was really 4 years old, they said I acted like a 10 year old. After this I headed back to eat and drink something. I said good bye to people and picked out some movies to watch with Mommy. I was getting tired and then I saw the lady with the tool box. I was so scared and this hurts Brookie. They had to take more blood and then put on bad band aids that always fall off. I settled in and watched another movie and drifted off. I have to be up really early tomorrow for my bone marrow biopsy and insert my Med Comp (Central Line). At least I lose this IV line in my hand. Please pray for me today, Mommy and Daddy look very concerned. PS. I talked to my buddy Grason today on the phone and we miss each other so bad. (You know things are going bad when you just about had this all finished and I deleted the section I was writing to you all. It is now around 3 AM and I am beside myself and need to regain my strength and composure and have to get a couple hours of sleep, so sorry!) (Attempt #2) As I begin to write this I call on the strength of the lord to guide my fingers as I write this. As you could tell from Brooke's last comment it was a rough day for Mommy and Daddy. I also want to write as much as possible about Brooke when she has a good day. They are so joyous and need to be enjoyed. Amy and I are truly humbled in the presence of the Lord and the responses to Brooke's website. As I began to write this tonight there was over 1,900 visitors and over 250 comments, the power of everyone's prayers and notes is beyond a power of strength to pull from. Our family is truly blessed. Our day was good and then the reality of this surreal experience started setting in after meeting with the anesthesiology team before Brooke's MIBG Screen. They of course had to tell us about the procedures for tomorrow and go over everything that could happen. Of course many precautions have been taken and they are ready for anything, but the fear as a parent are there. After Brooke did such an amazing job during the test and we went back to the room things were pretty hectic. The doctors came by and went over the results from the MRI from the day before. They informed us that there is a tumor and the Lymph Nodes were not that enlarged and they would not be sampling any of those. Tomorrow they will just be doing a Bone Marrow Biopsy and putting in a Med Comp Line (Central Line). The Central Line tells you that they are preparing for what Brooke is up against. This will at least allow Brooke to only have to be sedated once over a short period of time. She is due to start the procedures at 7:30 AM and it will take between 1.5 to 2 Hours. From there the samples will go to pathology. Well we figured at this time this would be a good time for Amy to grab something to eat in the cafeteria with all her friends. Well we have definitely figured out around here that nothing goes as they say or you think. Amy had not even gotten thru the line and I had to call her because Brooke's Doctors came into the room to meet with us. They would meet with Amy and I first and our parents second. Brooke's doctors are Dr. Jen Mangino, Dr. Robin Norris, Dr. John Maris (Head of Oncology) and Dr. Pete Mattei (Surgeon). Before going to the meeting I quickly jumped on Brooke's website to give me strength to know that the Lord and everyone out there is pulling for her. The road ahead is going to be long and hard. They told us that they are 90 to 95% sure Brooke has stage 4 Neuroblastoma. The MIBG Scan revealed that the cancer is in her vertebrae, hips and other bones. This is a rare type of cancer and only around 650 cases are diagnosed a year. As Amy and I sat there feeling that our most precious thing in life is in for the fight of her life I was hit with just how fragile life is and feeling helpless as our little angel who has never had the chance to fully understand life yet will have to endure such pain. How, Why, Unfair, What, a feeling of utter pain in your gut of disbelief. Oh Lord give us the strength! From here this is the initial diagnosis, we will not know the definite results to sometime early next week. Now more than ever pray and have the Lord show us the strength to be strong for our little girl. I think this brings you up to speed until tomorrow. I need to stop for now. Wednesday, January 07, 2009 03:22 AM Third day at hospital Today was my 3rd day at the hospital and today I had a really good day. I was able to laugh and smile. I also went down to the play room on my floor and played and walked today for the first time since Saturday. Also today Gabe's Daddy Mr. Greg came to see me and brought my daddy some stuff for work. He spent most of the day with us. My big surprise visitor today was Reverend Patterson from my church. That meant so much to me. We all said some prayers and I know it meant the world to my Mommy and Daddy! My Grammy was here again today as well and that is always special to me. Oh yeah, my silly Uncle Johnny and Aunt Johanna came bye to see me as well again. He is so silly! As far as what I had to do today I had to drink a lot of this fluid stuff for my CAT SCAN, wow that was a lot of fluids. I did a real good job though. I really surprised a lot of people because I did not have to be sedated for the CAT SCAN. I stayed perfectly still for 15 to 20 minutes and I was back in my new room quickly. I also was given a dye today to make my tomorrow even easier. The dye is for my MIBG SCAN tomorrow. That was all I had to do today and that is it for tomorrow. Of course I had to give blood again today and that is so not fun! I am looking forward to tomorrow, because I have a lot of people coming to see me. I think my Daddy wants to say a few words now. Please keep praying for me, I know its working...that's why I had a good day today! Hi everyone, I will keep this short. I just wanted to get this site up and going so everyone can stay informed. This site meant a lot to me when our good friends Nick and Melanie were going thru their son Trace's recovery. As of right now we really do not know a lot. It is too much to think about what ifs and what could be. Brooke has had lots of blood work, an MRI, a couple of ULTRA SOUNDS, and a CAT SCAN. Tomorrow is a MIBG SCAN. We will meet with doctors tomorrow and a surgeon to discuss the findings from the CAT SCAN and MIBG Scan. This will let us know how they will proceed for the biopsy. At this point all we know is they have found a small tumor and an irregularity in the bone marrow. They believe they are connected. The bone marrow is the cause of Brooke's pain in her hips and knees. I think this is about as much as I can report for now. This is going to be a very long road for Brooke and us. I or Amy will try to keep everyone updated as much as possible. You all are our lifeline and your prayers are what Brooke needs. Amy and I are just so gracious with prayers and support from everyone out there already. One final note Brooke and us are now on the 3rd floor South Room 10. This is the Oncology unit and we will be here for awhile I imagine. Again, thank you all and keep the prayers coming! |
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