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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

NIH

Hello again everyone.  Our Paris trip was amazing and when I can post a picture or 2 I will!  Right now I just wanted to do a quick update her new treatment plan.  We arrived at NIH (National Institute of Health) in Bethesda, MD on Wed.  We are here for the week to do a bunch of testing to make sure she is eligible for the T Cell trial here.  NIH has a great facility for kids to stay when here as an out patient called the Children's Inn and we stayed there Wed night but she develped a cold and we had to leave the Inn yesterday so as not to get any other kids sick and NIH put us up at a local hotel.  Thurs Brooke had labs, EKG, physical exam, Brain MRI, and a Neurology consult.  Today she has Neuropsych testing, ECHO, Pre-anesthesia consult and meet with the doctor to sign all the consent forms for the study.  Mon she will have surgery to have a tempory line placed and a bone marrow biopsy followed by apheresis to collect her T Cells.  Tues she will have a PET scan and then we can head home.  Thurs she will have an MIBG scan done at CHOP and then we head to Boston for a long weekend to visit our friends and to cheer on Brooke's Dana Farber Marathon Challenge Partner for the Boston Marathon.  Then we head back to NIH on April 22 through about Memorial Day for the trial.  Please pray that all goes well!  I really have a good feeling about this trial and so hopeful that it could put her into a 2nd remission.
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Comments

20 Comments

Janice Knodel
By Love and kisses, Aunt Janice Knodel
Amy, praying that all goes well. Nice to see you and Brooke over Easter.
Jody Geraldson
By
I'm praying that Brooke will be eligible for the T Cell trial at Bethesda, MD. God has gone before her all the way so I know He is with her in all of this. Praise God for all He has done.
Love you Brooke and Amy!
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Amy Reifsneider
By Amy Reifsneider
Thank you for the update. I will pray that it goes well and she will become NED again!

Amy Reifsneider
Barbara Webster
By barbara Webster. (Riley's Mom Mom)
what a trooper you are, Brooke. am praying this trial is the one!
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Jean Russell
By Jean Russell
So glad you have started this new trial. Keep well and stay happy. Hope you can get back into the Children's Inn soon. I know you loved it.
Nancy Smith
By Nancy Smith
I can't wait to see you in Boston! Sending lots of prayers your way!!
Donna OConnor-Keil
By Donna OConnor-Keil
Sending love and prayers...Thoughts are with you always...Keep that amazing smile..you are an inspiration to all of us..both of you...Love you and hope to see you soon on LBI...Donna
Shelly Hopkins
By Shelly Hopkins
Praying for you and Brooke!
Katharine Fowle
By Katharine Fowle
Always thinking of you both, keep up the fight! You are such an inspiration and an amazing duo!
david palermo
By Palermo Heart to Heart Foundation
Brooke, You have never left our thoughts and prayers... (you too Amy)
Keep up the fight

All of our love