Transplant Day

It's the oddest time. When we first arrived in what I now think of as our sideways step out of our life in Cheshire, this was all about Sam. The first day, when Kayleigh the nurse mentioned the option of Oscar being a possible bone marrow donor, we reeled with shock. Both of us, independently and simultaneously, thought "Hands off the other child." This is Sam's issue, Sam's problem, that we shall deal with, but leave Oscar the hell out of it. We were desperate to compartmentalise Sam's illness and leave it here in Newcastle, not to let it taint any other part of life.

But as time wore on - and boy did it wear slowly, like a hated scratchy school jumper - we realised that one child's illness of course, obviously and naturally, affects the whole family; we all have SCID, especially if it's commongammachain SCID, which, it turns out, is inherited down the female line. Oscar got lucky, Sam did not. And we are all affected by it. We make our children blithely and without knowing it, those interlinking strands of DNA weaving spells we know nothing of until birth blows away the mists and reveals the bad fairy spell we cast with our bodies, blithely and unknowingly.

And because we are all under the spell of SCID, we have Oscar tested, a 1 in 4 chance of being a match. We feel so unlucky, we're sure this is going to be impossible and we brace ourselves for the alternative: an anonymous donor and chemo for Sam to kill off his immune system to ensure that whatever fight he has in his tiny body cannot attack a foreign set of stem cells; it seems an extra cruelty. But Oscar is a match and suddenly the involvement of both children in this hideous sideways life seems the best news possible. Oscar is the impossibly handsome prince (he would probably prefer amazingly powerful superhero with powers of ice and fire) undoing the bad fairy spell but without the magic kiss; the weaving of his blood able to help Sam's weave stronger and more secure.

I talked in the first post about how it was as if someone had turned the telescope around and transplant, once a hesitant maybe, because a certainty. Now, it's as if we're gazing back through that telescope again. The hideousness of those first few days has withdrawn discreetly behind a veil of almost numbing time and the bone marrow transplant, which sounds so brutal, as if you must rip the very core out of your child, a poisoned core that you helped create, becomes a benign transfusion through a cannula in the hand, over in an hour and a half. 9 months to weave a bad fairy spell; 90 minutes to undo it. It hardly seems possible. Oscar almost certainly got the worst part of the deal, including a loathing of needles and cannulas (those in the know will be able to guess at the lurid stories and pictures affecting Baby Daisy and her simultaneous hospital stay), meaning sedation was necessary before the op. They had to drill? core? two holes in his thin little back to get enough marrow, another tiny healthy core being plundered. However, he seems to have bounced back fairly quickly. Then the anxious wait for them to count the stem cells and lymphocites in his blood before they gave it to Sam today.

There is something obscene about seeing your child's very marrow in a bag. I'm not entirely sure we are ever meant to see it, let alone watch it drip through a tube into the veins of your other child. Marrow is a secret, private sensitive thing, your innermost makings up (we feel something down to our marrow) and something is innately wrong when it is exposed to the world. There's something even more obscene about wanting to photograph the moment they start giving it to the spelled child -  a nurse asks me if I want to and my initial reaction is "Absolutely no way. I never want to remember this hideous experience and it's hardly going to go in the family photo album." I want to be able to gloss over this in later life, and yet I definitely know (in my marrow) we won't; it has scarred all our marrows. However, I also know that if I don't, someone somewhere will make me feel bad for not doing it, a pivotal and, let's face it, celebratory moment in our son's development.

But here's the thing: it doesn't feel celebratory because we have a well SCID. If Sam was grey and sick and thin, this would feel exciting and full of relief, because we would be turning a palpably poorly child into a well one. But because Sam is fat and pink and growing, this still feels both slightly unreal and superfluous, an over-reaction (we know it's not), a miscalculation (it really isn't) and I still feel like we're turning our well child into something else (a well-er one). I am thankful, and we will celebrate. In time, when we realise how lucky we have been.

It also feels like we should both be there - again we're offered the chance to be, but what about Oscar, post-op, in recovery? The reality of two children means I am back in the flat, catching up on lost sleep with him while Matt watches the new spell being cast. That feels wrong too - we both made this wrong spell, we should both be there to watch the righting of it. But in the end, all it comes down to is a slow drip of well blood into sick, turning the tide, as we beat on.