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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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I've been wanting to update since Brooke's scans last week but this was the first chance I've had.  Brooke wasn't due for scans for another 2 cycles but since a new tumor (C7) was spotted on the last scans (2 cycles ago) they wanted to do another MIBG scan to see how it was doing and make sure nothing new was developing.  The results were that everything looks stable.  I'm grateful for the stable scans but always hopeful that there will be improvement.  A few weeks ago Texas called to see how Brooke was doing and that they had an open spot on their T-cell trial.  I spoke with her Dr. at CHOP and we decided that we would hold off for now on that trial. Brooke's disease seems to be responding to the trial she is on now (the last 2 set scans showed that her tumor on L4 is significantly smaller and the newer one on C7-that was confirmed last scan but has been there since before she started this trial-see previous post for details-was getting "lighter").  So for now we stay the coarse and hope and pray that the next set of scans show improvements or at worst stable again.  These decisions are so difficult and I am so grateful that Brooke has Dr. Maris who is a world renowned Neuroblastoma specialist helping me to make them.  
So Brooke had the scan done Thurs and then was admitted on Friday to start Cycle 7 of her chemo.  The worst thing with this trial is that she is averaging 5 transfusions for each 3 week cycle.  Today she needed a blood transfusion, by the end of the week she will likely need a platelet transfusion and possibly another blood transfusion and then a couple more next week and so on...  I am so grateful for all the generous people out there that donate life saving blood and platelets!  Brooke is due to be discharged tomorrow after her chemo and fluids and while she is getting those, Channel 6 Action News will be interviewing us for a story they are doing.  Not sure when it will be airing but I will try to update ahead of time.  
Brooke had to miss the Ronald McDonald camp in the Poconos for the onco kids at CHOP this week because her chemo got delayed and even if I took her up there late it wouldn't have been safe because her ANC will likely bottom out to 0 in a couple more days.  The good news is she got to go to the Double H Ranch (8/5-8/10), a "Serious Fun" camp, founded by Paul Newman and Charles Wood, in the Adirondack Mountains.  It's a sleep away camp for kids with life-threatening illnesses and my good friend Emo from college is the nursing director.  Brooke had an amazing time full of adventures and new friendships and it was great for us both to get to spend sometime before and after with Emo and her family.  We are hoping to head back to there this winter for one of their winter family ski weekends and also back to Hole in the Wall Camp in CT for a fall family weekend (like we did last Nov).  If Brooke had her way we would spend every week or weekend of the year going to every camp in the country!
Almost forgot to mention that the Parkway Run/Walk to benefit the Cancer Center at CHOP is approaching and once again we have entered a team "Team Brooke"  to help raise money for much needed pediatric cancer research.  The 5K Run/ 2K Family Fun Walk will be held Sunday Sept 28th at the Four Seasons Hotel in Philadelphia.  
If you are interested in joining our team please click on this link to register:
http://chop.donordrive.com/team/teambrooke.  The registration fees are $25 for adults/ $12 for kids (if you register before Sept 14th).  
If you can't join but would like to make a donation then please click this link:
http://chop.donordrive.com/participant/brookemulford

Thanks and hope to see you out there!
Well getting late and we have a big day ahead of us so goodnight for now and I hope to update soon.
With love and hope, 
Amy
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Comments

13 Comments

Lorraine Golding
By Lorraine Golding
Amy, thank you for the update, always thinking of you and Brooke and wondering
how her treatment is going and hoping for news Brooke is responding to her
medications.

It is nice to hear Brooke has had some fun at the camps for children who are
undergoing treatments and can be with other children to have some fun
in their lives. It means so much to them as you see the smiles and for parents
to see their child enjoying other activities outside the hospital.

May God keep you strong Amy and the knowledge of the doctors treating
all the children with neuroblastoma come up with a cure with their
continued research.

God Bless, Lorraine
Amy  West
By Amy West
I love to hear about Brooke's travels, and adventures! I always feel that although she is undergoing treatment , Brooke is living life to the fullest.
Rob Shaw
By Rob Shaw
You and Brooke are an inspiration Amy. Glad to hear the stable news. Will continue sending up positive thoughts for some progress soon.
Virginia Dunn
By Jason and Virginia Dunn
Thanks for the update Amy! Glad to hear things are stable but we are praying for improvement! Love you two so much! Glad Brooke was able to go to that fun camp! You two are amazing. WIsh we were able to visit! Hopefully soon.
Marianne Patterson
By Marianne
I am so glad that Brooke is stable! I'll keep praying and thanks for the update. <3
Phyllis Dryden
By Phyllis Dryden
Praying for Brooke everyday!
EVA VAYO
By Eva Vayo
Praying that the treatment will continue to show signs of improvement!
cindy keesee
By
Thanks so much for the updates. I am keeping both of you in prayer. Take care

Cindy from Healthsouth
Erin Cox
By Erin Middleton, Nanticoke
Sounds like the current course is showing some hopeful signs. She sure is a trooper! Lifting you all up in prayer!
Peg  Bauer
By
You have been on my mind and in our prayers