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Mi historia

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). 

 

Fuente

Amy Mulford posted a new journal entry.

As usual I am way overdue on an update!  Last update was back in early January with scan results.  Since then Dr. Maris and I have been trying to come up with a plan for ... Lea más

Molly Kaye signed Brooke's Guestbook.

Brooke and Amy - I just wanted to let you know I was thinking of both of you today... as I do often! In fact, there are a lot of people who think of you in Wisconsin:) ... Lea más

Dorene Forrest-Baugh signed Brooke's Guestbook.

Our Prayers are with you, although I have never met you I think of you often. You are such a brave and courageous girl, your Gram' ma Millie and I have been friends ... Lea más

Erin Kelly signed Brooke's Guestbook.

Hi Miss Brooke and Amy,This is your American Girl Friend from Boston - Erin! I was thinking of you today and hoping you got my valentine that I sent to you :) You my ... Lea más

Amy West signed Brooke's Guestbook.

Hi Brooke and Amy! Hope you are enjoying the snow and having a fun day. Brooke,  you are Awesome ,and very lucky to have a great Mom !! Keeping you in prayer. Hugs. Lea más

joanie baker signed Brooke's Guestbook.

Hi Brooke! Just stopping by to say Hi!  Keep up the good work! You are an amazing person! I feel like I know you!! Keep your faith and give Mom and Dad hugs!! Love you ... Lea más

bren goolsby signed Brooke's Guestbook.

Dear Brooke,You are so incredibly brave and strong!  I am keeping you in my prayers and am sending love and hugs from North Caroliina. Bren Lea más

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. Lea más

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 Lea más

Jennifer 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 Lea más

Jennifer 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 ... Lea más

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