I think. I'm pretty sure it's mine. Except I also feel all I've done is shift from place to place over the last few months and I'm not entirely sure this is where I'm supposed to be. On the one hand, it's my lovely house and oh my goodness there is so much space we just run around and up stairs when there are only 16 of them and not 75 and we can just walk out the front door and we can move from room to room if we need some space or a change of scene; it's amazing. On the other hand, it's far from the hospital and the Liaison Team and the people who know what they're doing with Sam who are my safety net and here, I'm the one who knows what I'm doing and it is FREAKING ME OUT. Obviously, this is just because our first visit to the Countess is today and I'm going to have to be all: "Have you washed your hands/put on an apron/don't touch my kid" with the staff there and it's me taking charge instead of the RVI nurses. I'll be totally OVER this tomorrow.
In other news, it is so nice to be home. People have been kind and welcoming and I've sort of sidled back in so we're chugging along nicely. Sam is quite over-awed by his bedroom wall with all the sea creatures and also the garden. Watching the snow and the hail yesterday took quite a bit of his time, time otherwise best spent, he has found, banging on his drum (Truly he earns Sam-Sam the Bam-Bam nickname).
It's not just Sam who's been living in a bubble since December, we've found. The bubble has been family-size, enveloping us all, isolating us, yes, but also holding us and Sam safe, away from potential danger and within that bubble it has been quite comforting and sheltered. Out here, in the wide open world with people and children and our garage, it feels a tiny bit fraught. We are in the slow process of sorting out our junk; living in such straitened, pared-down circumstances makes you come home and just want to chuck 80% of everything you own away. I get out old toys for Sam and immediately box up half for the charity shop because I don't think I could clean them properly. The quotidian burden of guilt and anxiety over Sam being exposed to something he may not be able to handle and send us "scidding" back to Newcastle is fairly heavy. I want people to see him and admire his pink round cheery chubbiness, but I can't bear for them to touch him JUST IN CASE. It's really quite exhausting. At some point I might be able to let that go, but right now it's probably the best protection he could have.
But there is also life and the school run and being normal so we all have to carry on and just do it. I just haven't gotten round to popping the bubble yet.
Thursday, 3 March 2016
Sunday, 21 February 2016
Are we nearly done...?
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.
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, 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.
Friday, 29 January 2016
New Days
And so the second-born is home. Or halfway home, as they like to call it. He is released into our tender and somewhat panicked care a mere 11 days after a bone marrow transplant, which three words still have the power to awe and terrify, but, nevertheless, seem to have been the most benign of treatments.
We are given his medicine chart. He has four medicines each day, between one and four times: we are measuring out eight times, checking and double-checking with each other for bubbles and the tiniest of measurements (0.19ml of Cyclosporin for example.) Surfaces have to be cleaned before and after food; the bath cleaned before and after his bath. We hoover and steam-mop every day. His bath towels, pyjamas and vests are all cleaned daily, as are tea towels. Nothing damp is left to fester. I suspect the nurses have spreadbets on which parents call for help the fastest. We make it to day three before Sam does huge, enormous, runny poos and we panic and call the hospital. Actually, in hindsight, the prunes I gave him the day before to shift his two-day constipation have been more than fruitful; his squealing laughter as Kath feels his ribs is enough to make us blush at having taken their time.
Each week we have to go back for them to take his bloods, something he has never bothered over, and give his immuno-globulin, an artificial antibody infusion which he may have to have the rest of his life. He's been having one needle every week since being here, no bother; now two tiny needles injecting 2.5ml into each leg and for the first time ever he screams blue murder. But it's life and he will have to suck it up.
Outside of hospital, life gets routine pretty quick. Sam is asleep between 6 and 6.30pm, awake at 10pm for a dream feed and two more shots, then sleeps till 6.30am. We also learn after just one day we are ready to stab each other in the eyes with our forks (although we don't because there are only four and the thought of washing them up is more than we can bear) if we don't get out, so we make a plan to get out every day. It's no small matter: we are on the third floor with no lift and the heaviest pushchair in the world, but get out we must. Otherwise go mad we surely will.
Today, Matt having been home to pick up Oscar, I took Sam for a walk along the quayside in the *bracing* wind, cool and clear and blue. It was utterly mundane and more than amazing to just be taking my 5 month old son for a walk in his pushchair. To be out in the fresh air without hurrying to or from the hospital, without Oscar in tow there or back, nowhere to be, but just doing an ordinary Mum thing: pushing my sleeping child in the fresh air so as to have been out of the house that day.
And Oscar came. It was a bit of a moment: we haven't all been together since 7 December , so there was a tiny bit of crying. And Oscar showing Sam some moves. And Sam showing Oscar his words. Sibling rivalry probs starts tomorrow.
We are given his medicine chart. He has four medicines each day, between one and four times: we are measuring out eight times, checking and double-checking with each other for bubbles and the tiniest of measurements (0.19ml of Cyclosporin for example.) Surfaces have to be cleaned before and after food; the bath cleaned before and after his bath. We hoover and steam-mop every day. His bath towels, pyjamas and vests are all cleaned daily, as are tea towels. Nothing damp is left to fester. I suspect the nurses have spreadbets on which parents call for help the fastest. We make it to day three before Sam does huge, enormous, runny poos and we panic and call the hospital. Actually, in hindsight, the prunes I gave him the day before to shift his two-day constipation have been more than fruitful; his squealing laughter as Kath feels his ribs is enough to make us blush at having taken their time.
Each week we have to go back for them to take his bloods, something he has never bothered over, and give his immuno-globulin, an artificial antibody infusion which he may have to have the rest of his life. He's been having one needle every week since being here, no bother; now two tiny needles injecting 2.5ml into each leg and for the first time ever he screams blue murder. But it's life and he will have to suck it up.
Outside of hospital, life gets routine pretty quick. Sam is asleep between 6 and 6.30pm, awake at 10pm for a dream feed and two more shots, then sleeps till 6.30am. We also learn after just one day we are ready to stab each other in the eyes with our forks (although we don't because there are only four and the thought of washing them up is more than we can bear) if we don't get out, so we make a plan to get out every day. It's no small matter: we are on the third floor with no lift and the heaviest pushchair in the world, but get out we must. Otherwise go mad we surely will.
Today, Matt having been home to pick up Oscar, I took Sam for a walk along the quayside in the *bracing* wind, cool and clear and blue. It was utterly mundane and more than amazing to just be taking my 5 month old son for a walk in his pushchair. To be out in the fresh air without hurrying to or from the hospital, without Oscar in tow there or back, nowhere to be, but just doing an ordinary Mum thing: pushing my sleeping child in the fresh air so as to have been out of the house that day.
And Oscar came. It was a bit of a moment: we haven't all been together since 7 December , so there was a tiny bit of crying. And Oscar showing Sam some moves. And Sam showing Oscar his words. Sibling rivalry probs starts tomorrow.
Wednesday, 20 January 2016
The Long Way Home
Post-transplant, life is unremarkable. Sam turns a cheery glowing red, a sign, apparently, of the rich red blood cells Oscar has imparted to him. It should fade soon - at the moment he's a bit Violet Beauregard. He continues to thrive, gain weight, eat. Oscar goes home, an event remarkable only for being as painful as the last time we said goodbye and life ticks on.
And then something amazing. Suddenly Sam is being discharged and we can take him back to the flat. The doctors are so pleased with his unremarkable, sanguine (literally) progress, we are allowed to move immediately into what they term a halfway house, ie, our flat and prepare for life on the outside. We are thrown immediately into disarray: we have NOTHING up here for a baby. We thought we would be at least another two weeks in hospital before they considered moving us into purple isolation, ie being able to take him for short walks in preparation for the move to the flat. Lists. We must make lists as if we are starting from scratch with a newborn: changing mat, travel cot, bedding, towels, nappies etc.
It's not just the practical that is so discombobulating. We react in different, typical ways. I am pleased: I see progress, a return to reality on the cards, ticks in boxes and exams passed. Life is good and positive. Matt is pleased: but it also signals anxiety. We live in a bubble, free from responsibilities other than keeping clean. Here in the flat, we shall have to adjust to a much more elastic sort of bubble (Oscar can come, grandparents can visit!!), but for him the anxiety is that we have our safety net taken away, abruptly, without warning and we don't know how to cope. It's both a good thing and a bad thing: life is moving on and he isn't terribly sure how to cope with this Sam, this SCID Sam, outside of a hospital bedroom.
Today we were also moved from red isolation into purple. In practical terms, this doesn't mean a whole lot. A little less hand-washing, a little less rigidity about what passes from one side of the room to the other, the sign on the wall with the new rules is a different colour. But one line stands out. In bold. Line 3: Kissing IS allowed. For the first time since early December, we can kiss our son. With our lips. On his face. Like a parent. Strangely I didn't want to. Somewhere inside my head, a little voice is saying "You won. In this game of patience of not kissing him, raspberrying his tummy, blowing bubbles, you won eventually. And you don't have to give in now either." So I hold out for 10 more minutes and then I do kiss him. He's like "whaaaa?" Matt cries. That's probably a more normal reaction.
So now we prepare. And spend. A lot. Because we have nothing up here. We're trading dinners out and a bit of a lie-in in the morning (until the trek to hospital) for dinners in and lunches in and breakfasts in (for a couple of weeks anyway) and we have to go back to a 6:30am feed and being awake in the night for reasons other than drunk punters chunting on beneath the window. Obviously it's another good thing. But I'm glad it's after Newcastle Restaurant Week...
And then something amazing. Suddenly Sam is being discharged and we can take him back to the flat. The doctors are so pleased with his unremarkable, sanguine (literally) progress, we are allowed to move immediately into what they term a halfway house, ie, our flat and prepare for life on the outside. We are thrown immediately into disarray: we have NOTHING up here for a baby. We thought we would be at least another two weeks in hospital before they considered moving us into purple isolation, ie being able to take him for short walks in preparation for the move to the flat. Lists. We must make lists as if we are starting from scratch with a newborn: changing mat, travel cot, bedding, towels, nappies etc.
It's not just the practical that is so discombobulating. We react in different, typical ways. I am pleased: I see progress, a return to reality on the cards, ticks in boxes and exams passed. Life is good and positive. Matt is pleased: but it also signals anxiety. We live in a bubble, free from responsibilities other than keeping clean. Here in the flat, we shall have to adjust to a much more elastic sort of bubble (Oscar can come, grandparents can visit!!), but for him the anxiety is that we have our safety net taken away, abruptly, without warning and we don't know how to cope. It's both a good thing and a bad thing: life is moving on and he isn't terribly sure how to cope with this Sam, this SCID Sam, outside of a hospital bedroom.
Today we were also moved from red isolation into purple. In practical terms, this doesn't mean a whole lot. A little less hand-washing, a little less rigidity about what passes from one side of the room to the other, the sign on the wall with the new rules is a different colour. But one line stands out. In bold. Line 3: Kissing IS allowed. For the first time since early December, we can kiss our son. With our lips. On his face. Like a parent. Strangely I didn't want to. Somewhere inside my head, a little voice is saying "You won. In this game of patience of not kissing him, raspberrying his tummy, blowing bubbles, you won eventually. And you don't have to give in now either." So I hold out for 10 more minutes and then I do kiss him. He's like "whaaaa?" Matt cries. That's probably a more normal reaction.
So now we prepare. And spend. A lot. Because we have nothing up here. We're trading dinners out and a bit of a lie-in in the morning (until the trek to hospital) for dinners in and lunches in and breakfasts in (for a couple of weeks anyway) and we have to go back to a 6:30am feed and being awake in the night for reasons other than drunk punters chunting on beneath the window. Obviously it's another good thing. But I'm glad it's after Newcastle Restaurant Week...
Thursday, 14 January 2016
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.
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.
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