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Brooke’s Story

1/5/09, Brooke was diagnosed at Children’s Hospital of Philadelphia (CHOP) with stage IV high risk Neuroblastoma, a very aggressive pediatric cancer.  Her cancer started in her adrenal gland & spread through her entire body (every single bone in her body from her skull down & 80-90% of her bone marrow was packed with cancer).  Her prognosis was not good.  She went on to endure 6 rounds of chemotherapy, surgery to remove her right adrenal gland, 2 stem cell transplants(lethally high doses of chemotherapy followed by stem cell rescues), 12 rounds of radiation to her skull, abdominal area & both femurs & a 6 month immunotherapy clinical trial ch.14.18. Brooke’s scans on 9/10/09 showed that she was NED (No Evidence of Disease)!  Brooke finished treatment in April 2010. 

Asa result of her treatments, Brooke has high frequency hearing loss and now wears hearing aids, has Thyroid disease from her scans and Horner’s Syndrome.

NB has a very high chance of relapse & potentially serious late effects from the toxic treatments so she was being monitored closely & having scans done every 6 months.  12/5/12 she relapsed with a tumor on her spine (L4).   Brooke is now back in treatment & participating in a phase 1 clinical trial at CHOP.  Statistics are abysmal…but Brooke is a fighter & I pray that we can keep her disease stable or better & hope that a cure is found in time for my baby.

Update:  12/5/12 Brooke relapsed with a small tumor on L4 of her spine.  It was picked up on her routine 6 month scans.  She participated in a clinical trial at CHOP for 5 months involving Irinotecan, Temodar and the trial drug Temsirolimous.  She remained stable on this trial but it also made her very sick with terrible migraines.  From July 8th-Dec 30th she participated in a clinical trial at Boston Children's/ Dana-Farber Cancer Institute involving a Dendritic Cell Vaccine.  Brooke did great on this trial and had very little side effects, wonderful quality of life and her disease continued to be stable.  As much as I wish she could stay on this trial longer the protocol is only for 6 cycles so we will be off in search of a new trial (most likely heading to Texas Children's Hospital in Houston for our next adventure). 

 

Latest Journal Update

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Well, life is starting to settle down a bit for me and Brooke.  August 29th Brooke, Bailey dog and I moved to NJ to be closer to family and CHOP.  
New Address:
143 Kirkbride Rd Apt 12
Voorhees, NJ 08043
We've been keeping busy since then with treatments, Brooke starting a new school, holidays and trying to squeeze some fun in as well.  I'll try to give a brief update on the past few months:
Just before we moved, we were able to make a dream of ours and The Brooke Mulford Foundation come true and launched "Brooke's Toy Closet" at PRMC.  Now every child that has to go to the ER at PRMC will get a brand new toy/game/activity book to help entertain them while in the hospital and hopefully make their experience less scary.  When they leave the hospital they get to keep the toy as well.  The BMF also purchased a TV & DVD/VCR player that PRMC attached to a rolling cart and now can be rolled in to young patients ER rooms so they can watch movies while they are there as well.  We were so happy to be able to give a little back to a community that has done so much for us!  media story http://www.delmarvanow.com/videos/news/local/maryland/2014/08/27/14707471/
http://www.peninsula.org/body.cfm?xyzpdqabc=0&id=35&action=detail&ref=1064
 If you would like to make a donation to help keep the Toy Closet filled the address is:
The Brooke Mulford Foundation
PO Box 545
Salisbury, MD 21803
This fall, Brooke was signed by Philadelphia University women's soccer team as part of a great organization called Team Impact that match kids with life threatening illnesses with local college sport teams http://www.philaurams.com/sports/wsoc/2014-15/releases/20140905m03nfl.  Kids are drafted onto the team and become an official team member from draft day to graduation.  This has been such a great experience for Brooke and we have both enjoyed going to as many practices and games as we can and getting to know the girls on the team and their families.  The team had a great season winning the CACC championships and even made it to the NCAA tournament.  We got to travel up to Conn and see the Lady Rams in the CACC tournament and joined the team at the CACC tournament banquet where Brooke was recognized and given a standing ovation.  Such a great moment!  The girls on the team have really been awesome and have come out to support Brooke in so many ways.  Here's a link to a video of Brooke signing with the team https://www.youtube.com/watch?v=6dyaj5Wv3bQ
 Sept 28th,Team Brooke had it's strongest showing yet at the Parkway Run/Walk benefiting CHOP Cancer Center!  Thanks to all that came out to walk/run and donate!  
Brooke's Uncle Jason and Aunt Virginia came to visit us from California for a few days the end of Sept on their way to Uganda to adopt their precious little girl Mercy!  Unfortunately the judge there ruled that they must live there in Uganda for 3 more years before Mercy can leave the country!  We love following their journey and seeing Mercy thrive with them and we can't wait to meet her!
In October, Brooke's good friend, Cameron, was diagnosed with Ewings Sarcoma.  Up until our move this year Cameron and Brooke have been classmates and friends since Pre-K.  Cameron is in great hands at CHOP but please pray for him and his family as they begin this journey.  
November 21st, Brooke and 3 other lucky CHOP onco kids got invited to spend the night in the Phillies Clubhouse!  We were able to share this fun experience with 2 of Brooke's good friends, Johnny and Brady Mink.  They signed a one day contract with the Philadelphia Phillies, had a pillow fight with the Phillies Phanatic, got to hit in the batting cages, had a pizza party, movies & popcorn, a scavenger hunt throughout the stadium and breakfast with the Phanatic the next morning.  It was such an amazing experience that we will never forget!  Here is the story that ran that night on ABC in PHilly http://6abc.com/health/-young-patients-share-in-a-special-phillies-sleepover/406774/  and MLB http://m.phillies.mlb.com/phi/video/v36986505/phillies-clubhouse-sleepover-for-chop-kids  The story even made it on Good Morning America the next day!
Thanksgiving day Brooke celebrated her 10th birthday!  Can't believe my little peanut is double digits!
December 2nd marked the 2 year anniversary of Brooke's relapse.  The fact that Brooke is still fighting 2 years later is a miracle in itself and I feel so blessed to have another Christmas with my precious girl.  She is feeling well for the most part but we spend a lot of time at the hospital for blood and platelet transfusions.  She hasn't had scans since cycle 8 and is due for scans again sometime in Jan after she completes cycle 12.  Please pray that she continues to have stable disease or better yet some improvement!  
Hope everyone has a blessed holiday season