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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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Brooke and I have been at NIH (National Institues of Health) since May 3rd with Brooke participating in a phase 1 clinical trial of TCells expressing an Anti-GD2 Chimeric Antigen Receptor.  Brooke is only the 2nd child with NB enrolled and the 1st person to receive this high of a dose.  Brooke got high dose chemo for 2 days and then 2 days later (5/7) received her T Cell infusion about a week later the "cytokine storm" started with fevers climbing up to 105.5, some mild pain and very low blood pressures.  Her ANC was 0 for 12 days and neurtapenic for 18 days.  over the course of 2 weeks she needed 5 platelet transfusions and 3 blood transfusions.  Due to all the antibiotics she was on for the fevers she developed c-diff and was in isolation for a little over a week.  This past Thurs (5/29) she was released from inpatient and we got to move across the street to The Children's Inn where we have been having a great time and she has been feeling great!  This week she is having a lot of testing done.  Monday she had a bone marrow biopsy and 24 hour urine test, Tues she had labs, Neurospych testing and a CT scan,  today she had a mini aperesis so they can get an idea of how many T Cells are still present, Thursday she will have an MIBG scan and we will  have our wrap up meeting with Dr. Merchant (the Principal Investigator for the trial) and hopefully Friday we will be on our way back home!  We will return for a week in early July for more  follow up testing (we will have to return for follow up testing for the next 15 years - I love their optimism)!  Sorry as usual that it has taken me so long to update!  Please pray that we get great results from all the tests!   
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Comments

16 Comments

Wendy Whaley
By
Very encouraging. Thoughts and prayers always for Brooke and for you. God has His angels watching over 24/7....
Rose Kuhn
By Rose Kuhn, e-mail rkuhn328@yahoo,com
My thoughts and prayers go out to Brook and yourself May God bless you and your family!
Love always, I am a retired Marlton Shoprite cashier Good Bless!! Love you Brook.Ive been through cancer and a bone marrow transplant.It will be 20 years this December.God bless you Brook,God is GREAT, He will cure you, Love you
Rob Shaw
By Rob Shaw
Thanks for the update Amy. 5 years of follow up sounds good to me too!
You and Brooke are in our prayers daily!
joanie baker
By Joanie Hoey
Brooke is an amazing child/person as you are a Mother. God Bless you both. The strength you both have is overwhelming. I pray for continued progress.. Hugs and Love..
EVA VAYO
By Eva Vayo
Praying the clinical trial works & all goes well for Brooke for a long, long time!!! Blessings to both of you.
Terry Hogan
By
We continue to follow Brooke's progress and keep her in our prayers. Sending our best wishes that all the test results will be great! The Hogan Family (Kyle )