[jennyj87]

I have a huge prayer request. The boy I've been writing about on these forums is about to start an experimental treatment and is having second thoughts about treatment. His mom updates a carepage daily and this is what was posted today.

"Zasked me about the 8H9 trial and he wanted the details. I pulled out the consent form and went through it with him. It really, really upset him. He was in tears and scared about the risks and side effects and with the idea of having an abdominal catheter inserted that will have to be pulled out like the drain tubes and the femural line he had for stem cell collection. He doesnt' want to go through the pain again. He doesn't want to be isolated and away from us. The consent form noted that parents can still see and talk to hiim through a screen. It wasn't good enough for him. I couldn't console him. I reminded him that the risks and side effects he is facing on 8H9 are the same as chemotherapy with the exception of possible damage to his thyroid gland. He may need to take thyroid supplements for the rest of his life. It didn't make him any more accepting. He did mention going home and giving up only because that was an option listed on the form under "What if I don't want to take part in this study?" I told him that we could go home tomorrow if he wanted to but I am not letting him just give up that easy if he has made it this far into treatment. 7 months and he is on the last week of chemo and he wants to give up now?!?!?!? I told him that the week he was in the hospital a 24 year old kid died from DSRCT because his parents couldn't afford to get him to New York and he didn't have insurance. The week before that a thirty something father died of DSRCT in Ireland because he couldn't afford to go to New York for treatment, and he is here in New York in the best hospital for DSCRT and he has an opportunity to take advantage of this study and he wants to go home and give up? No way! I told him his dad and I would do our best to talk to the team to see what can be done to make him comfortable with the pain he is faced with. Then he says that the doctors don't even know if it will work, 8H9, so what's the point. I told him that it was true no one knows if it will work or what will happen or what side effects will materialize but if there is a chance that his body will respond, if there is a chance that this procedure will give him another year or two or more of life then we have to do it. He went to sleep in tears. Since this conversation, he has brought it up a couple of times. We haven't seen the surgical team yet to tell them about Z's concerns, but we will."

Its heartbreaking. What can we even say to her at this point? Please pray that they can make a decision that is good for them. He's only 15.