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My 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). 

 

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Carolyn Hall signed Brooke's Guestbook.

Dearest Brooke and Amy,You are the bravest people I know. As always, love and prayers are coming your way. Read more

Peg Bauer signed Brooke's Guestbook.

I am out of words  I do however have prayers left for HIS WILL and her life in HIS hands Read more

Jennifer and Paige Currie signed Brooke's Guestbook.

We are praying that God continues to hold you both tight in his arms to comfort & ease your pain!  You & Brooke are just amazing people!!!!Jen & Paige Read more

Jen Darcy signed Brooke's Guestbook.

Good luck with the trial!  Stay strong Brooke!  You are an inspiration to everyone who knows you or knows of you.  We pray for you everyday.  Jen Darcy and all the ... Read more

Stacy, Addison & Lucas Bernstein signed Brooke's Guestbook.

Thank you for the updates, Amy.  All three of us are saying prayers for you tonight, Brooke, and hoping you are able to go home tomorrow (even though you don't mind the ... Read more

Mare Gary from San Diego signed Brooke's Guestbook.

Praying for you Brooke. You are incredibly strong and brave. It is evident Jesus lives in your heart :-) Read more

cyndee kennedy and family signed Brooke's Guestbook.

Always so good to hear updates...it assures us that our nightly prayers are heard. Thank Aim for all the detail... I know it's hard to take the time and get all the facts ... Read more

Barbara Manlove signed Brooke's Guestbook.

Thank you Amy for all your updates.  Keeps me from calling your Mom constantly to see how You and Brooke are.And you Brooke - our absolutely amazing child. Hang in, keep ... Read more

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