I read today that Nick Snow - a neuroblastoma survivor died yesterday (or recently). His story and his mom were a source of strength and I was thinking that if Nick could have survived then Jonathan has a chance. Now I'm not so sure. Please remember angel Nick Snow.
Here is the email confirmation sent to the group:
I have been asked by Shannon to confirm to the list that Nick passed away "peacefully" with no pain and surrounded by people that loved him. Cause of death was a perforated bowel and severe pancreatitis.. I am sorry I cannot write more, but words just are not in me now.
Iris
Here is an email I sent to Nick's mom last year November:
Hi Shannon,
Sorry for the intrusion but I didn't realize you son went through so much! I don't know how you survived 84 months of treatment - but I've only been through 11 months and I don't know if I can go through another year - much less 6 months. It's good to hear about a survivor of NB - it sure does put a little light on at the end of the tunnel.
Best Regards,
Walter ...
----- Original Message -----
From: SHANNON SNOW
Sent: Sunday, November 27, 2005 1:47
Subject: Re: Med: bone marrow not clearing
Hi Christina,
It sounds like you have thrown just about everything at Michael's tumor. How much is still in his bone marrow? Has Michael taken the Accutane yet? Have you looked into Fenretinide?
Now seems to be a reasonable time to check out some clinical trials. Especially if Michael doesn't have rapidly progressing disease. You never know with a clinical trial............maybe your kid will be the first to benefit from something new, and then down the road, that something new will be standard treatment for other kids.
I snagged this off my son's website so I don't have to retype it:
Nick (age 16 1/2) underwent 84 months of treatment (chemotherapies, surgeries, 4 types of radiation, a bone marrow transplant, vaccine therapy, gene therapy, many phase 1 experimental therapies), and is finally in remission!
He has been off all therapy since December 2002 and is still well.
Almost everything Nick did was a clinical trial, and some of the therapies are now standard treatment.
You can check out www.NANT.org <http://www.NANT.org> and then click on 'clinical trials' and see what is new. Sometimes it's really hard to decide what to try, but you just have to follow your gut feelings and go for it.
Please keep us posted about Michael. Does he have a website?
Shannon: mom to Nick Snow
http://www2.caringbridge.org/ca/nicksnow
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