I hope I didn't scare anyone with my previous post. I wasn't angry when I wrote it - I just thought you should know (and I know from feedback that a lot of you wanted to know) what it is we're dealing with.
With that said, please continue to ask about Max and I won't question your motives because we're all on the same page now! I'll tell you about his day and you'll tell me about little Johnny's day and we'll get along just fine. ;-)
Friday, February 9, 2007
Monday, February 5, 2007
"How's Max doing?"
"How is Max doing?"
I get this question all the time. I'm not sure exactly what people really want to know. Are you asking about him today, like you might ask about Hannah? In that case, he's fine. He's probably at school playing with his friends, of getting a weekly check-up at the hem/onc clinic. He's not currently in any pain and his cancer is stable as far as we know.
Or do you want to really know what the hell's going on? Well, I'm gonna tell ya what's going on, because I really don't think anyone out there has any inkling of an idea of the gravity of Max's situation.
Neuroblastoma does not have a cure.
I get this question all the time. I'm not sure exactly what people really want to know. Are you asking about him today, like you might ask about Hannah? In that case, he's fine. He's probably at school playing with his friends, of getting a weekly check-up at the hem/onc clinic. He's not currently in any pain and his cancer is stable as far as we know.
Or do you want to really know what the hell's going on? Well, I'm gonna tell ya what's going on, because I really don't think anyone out there has any inkling of an idea of the gravity of Max's situation.
Neuroblastoma does not have a cure.
Only about 2 out of 10 kids that get this form of pediatric cancer will survive. The rest will battle this horrible disease for a year, maybe less, maybe for years and years of their life, before their poor little bodies finally succumb to it and all the treatments they've undergone to try to kill it once and for all.
This is what we're dealing with. Do I think about this everyday: yes, I do. Do I let this information run my life: No, I do not.
I think that Andy and I have been lucky in meeting the Hutchinsons, Neil and Margo, parents of Sam. Neil is a medical library when it comes to what's available for NB treatment out there, what's cutting edge, and what's just not working. He got the nifurtimox study started with Dr. Sholler and is looking into many other agents that may be beneficial to our kids. Andy is even on the playing field with the Geron study, introducing it to Sholler and getting the ball rolling for a pediatric trial on their drug.
There is a cure out there. We just have to find it for Max.
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