Finally we are given notice we can start to think and plan for a day we never believed would come around so soon. Our consultant, the slightly angelic Dr Slatter, will see us next Wednesday probably to discharge us, Sam being well and avoiding all other complications, of course. This 4-6 week period after transplant is the trickiest, the risk of Graft vs Host Disease at its highest. But in theory next Wednesday we can start to plan for the next phase.
It's been curiously quiet these last few weeks. We've been slowly learning the ways in which we can live with an immune-deficient baby; playing fast and loose with the town centre on a Saturday afternoon was a bit of a heart-stopper... However, weighed against his needs for a less populous way of life, are our human requirements for fresh air, a change of scene, an almost visceral need to give ourselves space around ourselves so that we're not constantly nudging and rubbing up against each other's still-slightly-bruised edges and exploding into vicious, tearful rows, short and sharp and immediately recanted, but still enough to wound with jagged words and nowhere to go to dodge them.
As those closer to me know, I'm not that great with 24/7 company. Although the days with Sam in this small flat are claustrophobic and nearly-dull, it's a relief when Matt has had to bring Oscar back and forth, giving me some valuable space to breathe and analyse and sometimes stay very still. To reason and give life (and sometimes take back) thoughts I wouldn't normally give space to. Then I can welcome him back genuinely and off we go again. (Quite seriously, words that strike fear of god into me are "And now we can be together ALL the time...").
I've also discovered I'm a much more positive person than I ever thought possible. We have had many many serious conversations with many doctors about Sam and at no point have I found myself thinking "This. This I cannot live with. I'm out." I haven't ever thought the worst; to a fault, in fact - I have taken only the good news from each conversation and possibly done quite a bit of *fingers in ears* la-la-la-ing at the rest. But this has also enabled me to, I think, cope with the realities of our so recently-fragmented existence better than I thought possible. As well as my unenviable ability to pigeonhole my life.
We saw the geneticist last week about the micro-duplication of this tiny bit of gene Sam has. All along I have taken the doctors at their word and simply looked at the child we have, this growing, developing, chatting, grabbing, eating, sitting child and refused to believe that it would have any impact on his life whatsoever. Blind wilful stupid optimism, you might call it. Naïve and ignorant, maybe. But this meeting, that we were both dreading with that cold ball of fear deep inside, wasn't as bad as it could have been. Sam may have a few mild learning difficulties - and that's MAY - but with the way he's developing, anything that might crop up won't be severe and he'll just be a normal kid like millions of others, but we have the added benefit of knowing in advance there may be dyslexia or speech development issues that might require a bit of therapy. Nothing heart-stoppingly limiting. Nothing that millions of people don't live with every day, having never expected such a thing. At least we are PREPARED. I love being PREPARED.
And I have found myself, day after day, with news of the Zika virus and the Times Stillborn campaign and a thousand other bad-news stories about the terrible things other families have to live with just thinking all the time, ALL the time, how bloody lucky we are and continue to be. How we have so far managed to dodge every bullet that came out of the SCID gun: He never didn't gain weight; he never got so ill he never recovered; he got a sibling match donor; he didn't need chemo; he was only in hospital 7 weeks; he so far continues to dodge GVHD; his micro-duplication isn't really that severe.... Honestly, of all the things that could have gone wrong with his life from the moment of birth, conception even, given his circumstances, we seem to have gotten off so lightly.
The only thing that keeps me up now is the thought that the transplant might not work. And then we have to start all over again.
Sunday, 21 February 2016
Sunday, 7 February 2016
Unexpected Loss
There are some people you just expect to be around forever. Your parents, teachers from school frozen at their exact age when you were most impressionable/intimidated, the queen, David Attenborough, Neil Diamond (bear with...). These are not people (and naturally there are your own countless others) that you ever imagine having to deal with the death of (Remember the shock of Diana or even the Queen Mother, who was a hundred and eleventy-ten and pickled in Dubonnet and gin).
On my own list was Terry Wogan. His sudden death has shocked and flattened me as if it were actually my own father who'd upped and died without telling me. Obviously my emotions are running slightly closer to the surface than perhaps is normal, but a week later, I'm really still quite emotional about it all.
I was first introduced to Terry and Radio 2 through Gemma, friend of yore and yonks and I was smitten, even as a teenager. I'm not going to bang on about sly subtle humour and erudite radio wizardry because at that age, I had no clue. I just liked the music. And the fact that he seemed to have such fun on air, as did the team around him. And that he - and everyone else - had no problem with corpsing on air, which is genuinely perhaps one of the funniest things that can happen (see here for a Bradley Walsh clip than has me hurting every time https://www.youtube.com/watch?v=nmwGFX5pgXw ). Wogan seemed to do it every show. I listened to him through my teenage years, through driving to Ottakar's of a morning to work, through university and beyond. I stood in my kitchen in Beulah Hill in London when he signed off from the breakfast show in 2009, weeping and late for work. I cried with laughter through his Eurovision years; the infamous year of Denmark I made myself a complete Middle Eastern picnic and watched it on my own in our "custard" flat in Barnsbury and almost made myself sick trying to retell it, slightly drunk, to a slightly drunk Matt after he came home.
More: He looks a bit like my dad. Enough for a bit of healthy transference, probably. And he played Neil Diamond a lot, like Pa. He never had a bad word to say about anyone and his general demeanour seemed to suggest that life is something to be laughed at, gently, without hurting anyone, something we should all aspire to, I suspect.
I also feel so damn cross. For him to have kept his illness so private (so much so in fact that when Paul Donovan, Sunday Time radio reviewer, wrote to the BBC about his extended absence, they had no answer to give him) is both typical and infuriating. His death has come so out of the blue, we have had no time to assimilate it; he has left us bereft without explanation or apology, which is both uncharacteristic and totally him. For him, many have written, his family was his all, his everything, his only and they alone knew and coped with his illness. He had no wish to inflict upon others. But the thing is, we were his family too. And although it was entirely his, and right, decision, to die in private with his closest for company, we TOGS will mourn him as family too. Because he gave us a piece of him and in doing so, belonged to all of us.
RIP Wogan. We miss you already.
On my own list was Terry Wogan. His sudden death has shocked and flattened me as if it were actually my own father who'd upped and died without telling me. Obviously my emotions are running slightly closer to the surface than perhaps is normal, but a week later, I'm really still quite emotional about it all.
I was first introduced to Terry and Radio 2 through Gemma, friend of yore and yonks and I was smitten, even as a teenager. I'm not going to bang on about sly subtle humour and erudite radio wizardry because at that age, I had no clue. I just liked the music. And the fact that he seemed to have such fun on air, as did the team around him. And that he - and everyone else - had no problem with corpsing on air, which is genuinely perhaps one of the funniest things that can happen (see here for a Bradley Walsh clip than has me hurting every time https://www.youtube.com/watch?v=nmwGFX5pgXw ). Wogan seemed to do it every show. I listened to him through my teenage years, through driving to Ottakar's of a morning to work, through university and beyond. I stood in my kitchen in Beulah Hill in London when he signed off from the breakfast show in 2009, weeping and late for work. I cried with laughter through his Eurovision years; the infamous year of Denmark I made myself a complete Middle Eastern picnic and watched it on my own in our "custard" flat in Barnsbury and almost made myself sick trying to retell it, slightly drunk, to a slightly drunk Matt after he came home.
More: He looks a bit like my dad. Enough for a bit of healthy transference, probably. And he played Neil Diamond a lot, like Pa. He never had a bad word to say about anyone and his general demeanour seemed to suggest that life is something to be laughed at, gently, without hurting anyone, something we should all aspire to, I suspect.
I also feel so damn cross. For him to have kept his illness so private (so much so in fact that when Paul Donovan, Sunday Time radio reviewer, wrote to the BBC about his extended absence, they had no answer to give him) is both typical and infuriating. His death has come so out of the blue, we have had no time to assimilate it; he has left us bereft without explanation or apology, which is both uncharacteristic and totally him. For him, many have written, his family was his all, his everything, his only and they alone knew and coped with his illness. He had no wish to inflict upon others. But the thing is, we were his family too. And although it was entirely his, and right, decision, to die in private with his closest for company, we TOGS will mourn him as family too. Because he gave us a piece of him and in doing so, belonged to all of us.
RIP Wogan. We miss you already.
Monday, 1 February 2016
Nerves
Things that keep me awake at night:
Sam: I'm 80% sure he's teething and it's affecting his meals. Milk is not enough yet it is all he wants (apart from morning porridge or Weetabix) and so he's back to waking at around 4am for food. That's quite annoying. I can't use Calpol because it could mask other symptoms so I am reduced to Calgel. This is the kind of setback that could reduce me to tears.
Things going well: They are almost going too well. We are going to have to hit a bump in the road soon. I worry about his neutrophil count which tends to go down and, while not something to worry about really, is still something that might need another medicine to help his system adjust. It also tends to be the result of dodgy testing, as it's quite rare in babies who have a sibling donor match and no chemo, but then, nothing about this situation is usual or normal and I see no reason why he couldn't just decide to throw us a googly on that one.
The microduplication of that bit of chromosome: So far, we have a baby who is progressing not just well, but brilliantly. He's (wobbly) sitting up, trying like hell to crawl, interested in books, making lots of different noises and bubbles, eating (in theory) and grabbing things. There is no 5 milestone left not kicked to the kerb. And yet.... who knows what the future brings with this? We have yet to see the geneticist but even the thought induces racing cold panicky heart beats and such fear and dread. I both want to know what he does and doesn't know (and in this case, it's more doesn't than does as it's so rare) and long to be left alone and not have yet another medical professional bring us yet another shitty diagnosis. I'm so tired of revelations about Sam. Of questioning every bit of information, whether it turns out to be of import or not. Of seeing a doctor and watching them check him over and each time prepare myself for some more unwelcome and entirely unexpected news.
Shopping lists: I can't just pop down to the shops to pick things up that I need with Sam in tow. We can't do a busy town centre. I can go round the excellent but extremely unbusy indoor market but I am limited in what I can a) fit under the pushchair and b) carry up the stairs with Sam and the changing bag. So I make lists in my head for Tesco for Matt to fetch. Lists for Matt to bring back or take to Cheshire. Lists of things that could be picked up in town with the least expenditure of effort. Lists that are effectively a vicarious life being lived outside of the flat.
Coming home: I am both looking forward to it and dreading it. All I want is to be home (but see point two, so I try not to really think about it too much) but I am also wary of seeing friends. There will be all this messy emotion and noise (Oh come on... you know there will be) and I sometimes think (like I used to as a kid) how it would be to just be invisible and slip in and out of places and not go through the whole "welcome home" THING. But on the other hand, I so miss my life and I've sort of accepted that's what people DO and I will just get cards laminated with FAQs to hand out along with hazmat suits and boots for visitors. I also just miss laughing. Obviously Matt and I still laugh and Oscar and Sam are quite jolly, but I do miss unweighted, not-really-giving-a-fuck laughing. Also it transpires Matt has no idea how to make a sandwich that doesn't involve cream cheese and therefore that Oscar's sandwich requires buttering BOTH SIDES, so some sanity might be nice.
Noise: Dear God but this city never sleeps. We have a theory the bus stop becomes a taxi rank at the end of the strip of clubs we unfortunately seem to be bordering. And it's the law that the taxis have to use their horns once every 4 minutes to alert everyone in the vicinity they have a job to do. I actually cannot imagine sleeping in my own bed in Tarvin without ear plugs and a pillow over my head. It cannot be that quiet.
That's sort of enough to be going on with. Now I have washing to put away and beds to remake.
Sam: I'm 80% sure he's teething and it's affecting his meals. Milk is not enough yet it is all he wants (apart from morning porridge or Weetabix) and so he's back to waking at around 4am for food. That's quite annoying. I can't use Calpol because it could mask other symptoms so I am reduced to Calgel. This is the kind of setback that could reduce me to tears.
Things going well: They are almost going too well. We are going to have to hit a bump in the road soon. I worry about his neutrophil count which tends to go down and, while not something to worry about really, is still something that might need another medicine to help his system adjust. It also tends to be the result of dodgy testing, as it's quite rare in babies who have a sibling donor match and no chemo, but then, nothing about this situation is usual or normal and I see no reason why he couldn't just decide to throw us a googly on that one.
The microduplication of that bit of chromosome: So far, we have a baby who is progressing not just well, but brilliantly. He's (wobbly) sitting up, trying like hell to crawl, interested in books, making lots of different noises and bubbles, eating (in theory) and grabbing things. There is no 5 milestone left not kicked to the kerb. And yet.... who knows what the future brings with this? We have yet to see the geneticist but even the thought induces racing cold panicky heart beats and such fear and dread. I both want to know what he does and doesn't know (and in this case, it's more doesn't than does as it's so rare) and long to be left alone and not have yet another medical professional bring us yet another shitty diagnosis. I'm so tired of revelations about Sam. Of questioning every bit of information, whether it turns out to be of import or not. Of seeing a doctor and watching them check him over and each time prepare myself for some more unwelcome and entirely unexpected news.
Shopping lists: I can't just pop down to the shops to pick things up that I need with Sam in tow. We can't do a busy town centre. I can go round the excellent but extremely unbusy indoor market but I am limited in what I can a) fit under the pushchair and b) carry up the stairs with Sam and the changing bag. So I make lists in my head for Tesco for Matt to fetch. Lists for Matt to bring back or take to Cheshire. Lists of things that could be picked up in town with the least expenditure of effort. Lists that are effectively a vicarious life being lived outside of the flat.
Coming home: I am both looking forward to it and dreading it. All I want is to be home (but see point two, so I try not to really think about it too much) but I am also wary of seeing friends. There will be all this messy emotion and noise (Oh come on... you know there will be) and I sometimes think (like I used to as a kid) how it would be to just be invisible and slip in and out of places and not go through the whole "welcome home" THING. But on the other hand, I so miss my life and I've sort of accepted that's what people DO and I will just get cards laminated with FAQs to hand out along with hazmat suits and boots for visitors. I also just miss laughing. Obviously Matt and I still laugh and Oscar and Sam are quite jolly, but I do miss unweighted, not-really-giving-a-fuck laughing. Also it transpires Matt has no idea how to make a sandwich that doesn't involve cream cheese and therefore that Oscar's sandwich requires buttering BOTH SIDES, so some sanity might be nice.
Noise: Dear God but this city never sleeps. We have a theory the bus stop becomes a taxi rank at the end of the strip of clubs we unfortunately seem to be bordering. And it's the law that the taxis have to use their horns once every 4 minutes to alert everyone in the vicinity they have a job to do. I actually cannot imagine sleeping in my own bed in Tarvin without ear plugs and a pillow over my head. It cannot be that quiet.
That's sort of enough to be going on with. Now I have washing to put away and beds to remake.
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