Having a major dose of the collywobbles over going to Germany for antibody treatment. Not the practical stuff, whatever it takes we will get on and do in spite of it being an all round major league pain in the arse. No, my problem is much more fundamental than that. My problem is whether or not this is the right thing to do full stop. My problem is we cannot afford to get this decision wrong, to do the wrong thing. My problem is it might not make a blind bit of difference what we do, any of it. For all I know, this problem is insoluble. Or maybe it isn’t a problem at all.
There is just nothing concrete to go on (at least not that I’ve seen so far) other than opinions and instincts. And whilst these are opinions of doctors that I respect and for whom I have a high regard, they are still not the same as cold hard facts. In the meantime I keep hearing of kids relapsing either whilst in Germany having this treatment, or soon after completion. I’m not ignorant of the statistics regarding relapse in neuroblastoma, but it’s starting to get to me all the same. I need to hear the other side of the coin, some stories of children who have had this and haven’t relapsed. Or at least some numbers.
By definition this trial includes difficult to treat cases, who have failed frontline therapy, or at least taken longer to respond and therefore cannot have antibodies elsewhere. So maybe the success rate was always going to be poor (I’m just speculating here)? It’s not a treatment that was designed for an extensive disease burden such as Adam has that’s for sure. Or is it an extensive disease burden? Maybe not. We still don’t know what it is; only ever will if it starts growing again I guess. In all likelihood what lights up on the MIBG isn’t going to be touched by antibody therapy, so what if it does start growing again at some point in the next 6 or 7 months? Then we’ve blown it.
Give me strength. Please. I think I’m heading for a breakdown.