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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 ...
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Journal
Friday, April 18, 2008 11:07 AM CDT The twins are going to be 6 next week : they are beautiful and healthy and so naturally interested in their brother... If you ask them about how many sisters and brothers they have, you are sure they won't forget Alexandre (or be shy to talk about him).
Sarah, our little baby (well, a big girl now that she is 3 and a half, it seems that, in her mind, she has reached the age of wisdom - but, don't worry, it's only in her mind !) will very soon become older than Alexandre (on May 5th) and thinking of this is just a little too much for me these days.
The three big girls are leading their life normally : Nathalie, who is now 18, will go to medical school next fall, Sandrine who is 15, does not know yet what she'll want to do later ; and Karine, almost 13, is spending 2 monthes in Germany in order to become a fluent speaker. For us, there is no time to rest, we would use a few arms and legs more !
As every day, Alexandre is in my heart and thoughts, with his little smile .....
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Hospital Information: CHU Grenoble (FRANCE)
Links: http://www.geocities.com/cecilecogez/ The website of the whole family
http://http://neuroblastome.free.fr/ The website and discussion list for french speakers
http://http://arc-en-ciel.iws.com/
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