Tuesday, 14 June 2011

Aarghh …. !

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.


  1. Whatever you decide will be right for you. In my thoughts.

  2. I know zero about Adam's disease,but I do know that doing nothing is the hardest course for a parent of a chronically sick child.
    You feel like you have stopped fighting for your child - but you haven't, you are just take a rest before the next big battle! xx

  3. While in the midst of my own son fighting cancer, I truly cannot imagine the pain you are feeling with all of this. I have not had time (yet) to read the whole blog but I get the gist...Britain sucks for medical treatment is so many ways (I'm English but live in America and my mom who has Lupus gets nothing there compared to what is offered here).
    Are you able to get some kind of advice from the American doctors? I know everything costs ridiculous amounts here, but even just seeing if they agree with things might help (or not...I really have no idea but am throwing out suggestions).
    Can I try asking my son's doctor? Not sure if it will work but I really want to help if I can.
    I feel your pain, angst, and I know the heartbreak of watching your son take the poisons Dex, Dox, Methotrexate, 6Mp etc....It all is so unfair. But I am honestly so saddened that you have to travel and guess which treatment is right.
    Love and sincerest hugs,
    katy x

  4. Thinking about all of you lots....cannot imagine how difficult this is.

    I know it's nowhere near in the same league, but when I was waiting for my transplant my lung wouldn't stop collapsing so after they told me that in order to leave the hospital I'd have to have it "glued" back up, which could in turn make a transplant impossible/fatal. Very tough decision not knowing what the future held...

    I think all you can do in these situations is follow your instincts and know that whatever your decision, it will be the right one based on the (limited) information you have at this time. I told myself that because there was no right answer, it meant there couldn't be a wrong one either.

    Love to you all. x