Thursday, 16 September 2010

And so it begins...

It doesn't matter that I've prepared myself for the best part of the last twelve months for what is about to occur. It doesn't matter that I've written about it countless times. It doesn't matter that I am fully aware that this is something we need to do in order to give Adam the best chance of living a normal life again. Or that at times I've doubted we'd ever get to this point so just to be here and the fact that we're still fighting means something in itself. It doesn't matter. I'm still deeply scared. Anxious doesn't nearly cover it. There are so may what ifs and maybes. So many risks, Risks of serious complications, some of them life-threatening in themselves. Liver failure, heart damage, kidney damage, hearing loss, serious infections. And at the end of it we may be no further forward than we are now. In fact we may find ourselves coming out of the other side  in a worse position - the damage done to Adam's body will leave him weak and vulnerable - and not improbably with widespread disease still. Rightly or wrongly it feels to me like this is the final throw of the dice.

Tomorrow (Friday) and next Monday Adam is going for a hearing test, kidney function test, echo cardiogram, and a dental check-up. On Tuesday he's admitted to UCH in London and Wednesday he starts MIBG therapy. One week confined to the lead lined room with minimal outside contact. Then one week at home. Or rather somewhere that Jake and Jessica are not. There is a danger from the effects of secondary radiation, particularly in Adam's excretions, so for that week we have to live apart though we're not exactly sure what the living arrangements will be yet. Then it's back to UCH for another week of MIBG therapy in isolation.

That's the easy part.

On Oct 13th we transfer straight from UCH to Royal Marsden for High-Dose Chemotherapy with stem cell transplant. That usually means a 2-3 month in-patient stay. The reason for the back-to-back is so that there is only a single transplant involved. We were warned about things snowballing but now it's happening it so feels like everything is starting to unravel and what little control we may have had is being wrested from our grasp. He hasn't recovered properly from surgery yet and has lost a lot of the weight that had taken so long for him to put on. Gone in a fortnight. And soon all that hair that has slowly grown back will be gone too. Not gradually this time, but practically overnight.

There's just so much to think about. To be apprehensive about. Scared about.

We'll see you again in January. Or maybe late December if we're lucky.


  1. You are always in my prayers, you really are "BRAVEHEARTS"
    Deb x

  2. Will be thinking about you guys. Take care.

    Jacob's Daddy

  3. God Bless to Adam for being such a brave boy
    God Bless to his Mummy & Daddy for their unconditional support
    God Bless to the rest of Adams family to keep them safe & well
    God Bless to those others who keep this family in their thoughts....
    My thoughts & prayers are with you ALL x