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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

Paris Bound!

Once again I see that it has been a long time since I have updated -  since Thanksgiving actually!   So Brooke was not feeling 100% in the week leading up to Christmas and had a urinary tract infection.  We both prayed she would make it to Christmas with no fevers/admissions.  She was able to make it through Christmas Day and most of the evening before she started heavily bleeding while urinating and sometimes long after.  So off to CHOP ER we went and she was admitted until Jan 30th with Hemorrhagic Cystitis.  She was due to start her next chemo round on Jan 2nd but after 2 weeks of delays due to platelets being too low and ALT liver enzymes being too high, she was removed from the clinical trial.  She had scans a week later that showed that thankfully her disease is still stable.  Dr. Maris suggested a T-Cell trial at NIH (National Institute of Health) in Bethesda, MD but after speaking with the doctors at NIH they won't be ready for Brooke until April at the earliest.  In the meantime Brooke has started a couple oral bridging chemos that I am able to give her at home but next week will be discussing with Dr. Maris whether to continue with the bridging chemo until NIH is ready for her or to enroll in another COG clinical trial. 
Now for the really exciting news!  When Brooke first relapsed, a little over 2 years ago now, good friends started a fund called "Brooke's Wishes" so that Brooke could go anywhere she wanted to go and do all things she wanted to do.  We have dipped into it a little over the past couple years with a trip to Disneyworld in 2012 and some small weekend trips but with the last couple trials she has been on it has been very difficult to plan anything since her schedule was ever changing.  When the account was first set up I asked Brooke if she could go anywhere and do anything what would it be and she replied, "To meet Bethany Hamilton and to go to Paris to see the Eiffel Tower."  She remained firm with these for the past 2 years.  As Brooke's 2 year relapse anniversary (12/5) was approaching I started to feel a sense of urgency to start making these dreams realities (most kids don't survive this long after a relapse with NB) and I booked the trip to Paris Dec 30th!  I was hesitant to tell many people about it because I had a feeling that it just wasn't going to be able to happen and sure enough a week after I booked the tickets she had the delay in her treatment and her team at CHOP asked me if I could change the dates of the trip to a week earlier.  I got a wonderful rep with Usairways that allowed me to make all the changes and waived the $450 it would have cost to change the tickets and also the 90,000 more frequent flyer miles!  But then a week later the change became unnecessary when she had to come off the trial anyway.  So I have kept my lips pretty sealed waiting for another shoe to drop but here we are on the day that we are scheduled to leave for Paris and it looks like we are going to make it after all (although Octavia dropped a few inches here making me nervous it was going to mess things up for us)!  We leave tonight out of Philly and arrive in Paris at 7:55am Wed morning!  We will be there for the week and look forward to crossing off everything on Brooke's list including having dinner in the Eiffel Tower and going to Disneyland Paris!  We will even get to visit with Uncle Scotty one day while we are there as he is studying French in Paris in preparation for doing mission work in Togo Africa soon.  Thank you so much to everyone who donated to the Brooke's Wishes account - it is because of all of you that Brooke is getting to go on her dream trip of a lifetime! 

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Comentarios

19 Comentarios

Amy  West
By Amy West
Such a great choice, Brooke! Hope you and your Mom have an AWESOME trip!! Hugs from Bridgeville, DE.
Tracey Hudson
By Love, Mrs. Hudson
Bonjour Brooke and Amy!
I am soooo happy for you!
Kelly Niemczyk
By Kelly Niemczyk
I am so excited that your dreams are coming true. Have a fantastic time and send lots of pictures!
jan degruy
By jan degruy
so excited for you guys and the gift of Paris! Praying this is a trip of awesome memories and uneventful medical! Praying that Brooke feels wonderful for the trip and you all have the time of your life. Praying that the trial at NIH is an option soon and that things will be uneventful until then. Praying for a perfect trip in Paris!!
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Karin Maloney
By Karin Maloney
Have a fun and safe trip!!!!!
david palermo
By Dave/Palermo Heart to Heart Foundation
Brooke, don't forget to send photos!!!!!!
Enjoy yourself young lady
BETTY STEPP
By Betty Stepp
so thankful Brooke's dreams coming true God bless you all and safe journey.
Tony and Billye Sarbanes
By Tony and Billye Sarbanes
Brooke and Amy--That will be a super trip. We were there last September and saw all of the Paris sites. We also visited Normandy which is something we have always wanted to do so we could see where those brave Americans, British, Canadian and Polish troops landed some 70 years ago now. The entire trip was SUPER and we enjoyed every minute just as you will. We hope you have a great trip and see all of the sites to include the lovely Mona Lisa!! Take care and be good. Love -Tony and Billye Sarbanes
bren goolsby
By bren goolsby
Such exciting news! Keeping you in my prayers - Have a wonderful time!
Phyllis Oldham
By Phyllis Oldham
This is wonderful. Have a fantastic trip!