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Alexandre



Alexandre was 2 years old when he was diagnosed with Neuroblastoma Stage IV on February 15th, 2000. It came as a complete shock for his parents and his 3 big sisters, but everybody started at once in the fight with him.
He had four chemos, then surgery to remove the abdominal mass and the adrenal gland. He was not NED at that time. He then had 4 more chemos before going into autotransplant in October 2000.
After transplant, he was still not NED (some spots on the knees at the MIBG) and we started radiotherapy (he had amplified N-MYC). In February 2001, we started Accutane, and we were all hoping this year would be the good year for getting rid of cancer.
At the end of this month, he started complaining of knee aches ... an MIBG scan was done early March and the result was devastating : relapse, in many places.
No hope was left to us after such a relapse, happening so shortly after transplant.
Nevertheless, we tried Topotecan (didn't work at all) and oral VP-16 which worked well in having him stay pain-free but not in stopping the cancer progression.
We also tried intravenous Vitamin C which probably helped him stay off morphine until 2 days before his death.
Alexandre stayed home until the end, becoming more and more tired (liver shutting off), but being surrounded by all the people he loved.
On June 14th, 2001, we found him smiling softly in his bed : he had left us silently, during his sleep. He was 3.5 years old.

He is now free from all the awfulness of cancer : please, pray for all these children who are fighting so hard for just having the possibility to live the life of normal children ...

Journal

Friday, April 22, 2011 10:48 AM CDT

Tomorrow, the twins will be 9 ... Alexandre would be proud of his siblings. He is greatly missed by Nicolas, although they never met "for real".
His darling big sister Nathalie went away from home last year, to live with other students in a nice flat. Sandrine and Karine are still in college, but will very soon leave home as well.
The twins, Helene and Nicolas, with the last little princess of the family, Sarah, are happy to live and caring to others (when they are not arguing together !) : I'm nevertheless glad to say they are full of this kind of creativity that makes parents mad on the moment but which shows good mental health and builds a mountain of hilarious remembrances to share when they are bigger, with this kind of light adults have in their eyes when they had a happy childhood.
Patrick and I just celebrated our 25th wedding anniversary, and I will very soon be a "fiftysomething" ; I can't help remember Alexandre's eyes wen he helped me blow out my 40 candles, an eternity ago, 10 years ...

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Hospital Information:

CHU Grenoble (FRANCE)



Links:

http://www.locomotive.asso.fr/   The website of the Grenoble Association which helps children with cancer
http://neuroblastome.free.fr/   The website and discussion list for french speakers
http://sympa.medicalistes.org/wws/info/pas-a-pas   The french discussion list for angel parents


 
 

E-mail Author: ccogez@yahoo.fr

 
 

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