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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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Amy Mulford posted a new journal entry, "Not what I wanted to hear".

This was not the update I was hoping to give regarding Brooke's scans yesterday.  Her cancer has unfortunately progressed and she now has a second tumor that is located ... Read more

Love you, Mrs. Hudson signed Brooke's Guestbook.

Hello Brooke!Hope you are enjoying the summer and a break from school. I think about you often and always pray for you and your mom. Read more

Amy Mulford posted a new journal entry.

Well I got on here today to ask everyone to pray for Brooke for her scans today and I see that I never updated with the good news of her last scans back in April.  Two ... Read more

Rob Shaw signed Brooke's Guestbook.

Praying that all is well ladies. No news is good news, yes! We love you both Brooke and Amy, and pray for Gods will to be done for you daily! Read more

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:) ... Read more

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 ... Read more

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 ... Read more

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. Read more

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 ... Read more

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 Read more

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

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