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.

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...

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.

Food, Part II

It wouldn't be a blog of mine if I didn't write about food extensively at some point. City living, by which I mean one you can actually walk around, rather than the sprawl of London, is by nature conducive to good eating - all that competition - but the huge tsunami of excellent, innovative, global cuisine has yet to hit rural Cheshire, to a point (although obviously it is to be found in Manchester and Liverpool. It's just we never go there. Too lazy.), so I'm trying to trough my way through it all before we return while I can. This New Year's resolution was never going to be about losing weight.

So: notes for the future or for anyone ever in this part of the country. A sort of list of must-eats to remind myself of at a later date. Or when Oscar goes home, which will free up a LOT of time. And money, because we won't have to spend it all on sushi (see below) and outings.

Longhorns BBQ: Meat. Really excellent smoky slow-cooked meat. Lots of it. On a board. With pickles and fries. It's hipster (sigh) but not tiresomely so and The Board take out, which comprises beef ribs, Andouille sausage, pulled pork, pork ribs, beef flank, chicken wings and more gave us 8 (EIGHT!!!) separate meals including sandwiches and chilli for £27.50.

Nudo: Oscar's new love - sushi. Christ it's an expensive habit but this is really good. The sushi is already in its bento box but everything is really fresh and good quality. There are soups and noodles, salads and juices. Oscar especially loves the weird squidgy omelette thing-y and the raw salmon; we're both having grilled eel next time we go. We've had to limit this to twice a week, it's so addictive.

Dabbawal: Indian street food. Frankly, Indian is so bloody bog-standard everywhere you go that the moment I see somewhere offering something other than chicken korma and naan and jalfrezi, I leap on it like a rabbit on speed. Matt naturally loves the bog-standard, so I was able to get him a chicken korma, garlic naan, onion bhaji and sag paneer (sigh. yawn.). But I was able to get a really good fresh zingy bhel puri and a masala dosa with vegetable sauce that admirably survived the take-home process. The restaurant is also bordello-pink, so naturally it's a beacon of hope to those who despair of flock wallpaper and gold chairs.

Hei-Hei: Sichuan Chinese on the doorstep. They definitely don't do this in Cheshire. The point of Sichuan is its heat and fire, so I was a bit disappointed my pork belly and salted fish aubergine hotpot was completely devoid. It was, however, squidgily, umami-ly delicious. Just not spicy. So next time I'll choose something with a chilli icon. Note to self: Doh.

Kracklin: More meat. In bread. The window reads "Meat and Bread." Salt beef, pulled pork, porchetta, Reuben's, Asian-style chicken, inventive slaws and sauces and POUTINE!. Very heaven.

Fenwick's Patisserie: I now get it, the northern love of Fenwick's. There's a beautiful patisserie café which has a Sachertorte nicer than the one I had in Vienna. They have a wood-fired pizza café which is always packed and an Asian tapas bar I'm determined to get to at some point. They also have a proper cold-brew coffee bar, which I'm determined to mainline as soon as I can afford it. They also have a superb fishmongers and butchery, a spice shop which makes up your own blend of curry powder, a wine section with tasting bar (why have I not moved in?), an expensive bakery. Obviously none of this is at all related to the actual store which, by the way, does have an unrivalled make-up department which again I intend to plunder once more free.

Han Bei Chinese dumplings in the market. Freshly-made, steamed and served in front of your actual eyes.

There are others in the pipeline: Pleased To Meet You, a gin joint with a funky menu; The Big Mussel, seafood on the quayside; Marco Polo, a family Italian at the bottom of the steps; Solano's, the Peruvian three floors down; Dacantus, doing what looks like proper Spanish tapas, although maybe not as authentically as Chester's Porta. There's a dim sum restaurant on the edge of Chinatown I have to get to with Oscar as well. I'm desperate to have all these food experiences with Oscar, we're running out of time, against the clock which I also hope begins ticking a bit faster from Thursday. Quick, quick, eat, absorb, savour, remember.

Food and Love

 Weaning a baby is an experience fraught with anxiety at the best of times. In the comfort of your own kitchen, within the rhythms of your day, it can be a wonderful, rewarding, frustrating experience as your tiny child opens his beak for more banana or mango or experiences dislike for the first time with carrot or peas, his face wrinkling with displeasure. It can be quite frightening, giving your baby something that for the first time in his short life he seems to dislike (and the temptation is to immediately write it off and never give it again, but PERSIST! NOW is your window of opportunity to give them as many tastes as you can; they will never again be as receptive to every flavour.) But it's also a very instinctive experience: you taste the food with your baby, put the spoon in your mouth, make big "yummy" sounds and ensure it is as interactive and enjoyable as it can be for both of you. The act of feeding is the act of love, an act of sustaining inextricably linked to maternal and biological instinct.
 

Weaning Sam is an entirely different practical proposition. Admittedly he is an early eater, a hungry baby who is on a diet imposed by the dietician, his milk adjusted for volume and not calories because his the line on his weight chart is virtually vertical. At home I would lovingly concoct fruit and vegetable purees, particularly green ones, because of that 4-7 month flavour window, steam carrot and courgette batons, give him crunchy cold carrot or cucumber sticks for his sore gums. Here in hospital there is no home-cooked food. I am entirely reliant on the best ready-made pouches I can get in Boots. Once opened, they can't be re-used, even if he has just a tiny teaspoonful. I squeeze it into tiny sterilised pots and then try to teach my child the foreign act of eating something other than milk without being allowed to show him myself. I cannot put the spoon in my mouth, I cannot eat alongside him, I can't put my fingers in the puree and show him how to transfer food. He can't watch his family eating and demand a crust of bread to chew on. I can't have raw food in the room, I can't give him cold teething rings to chew on (not that he's over keen on anything other than his fingers, to be honest).  I'm going on blind instinct rather than natural cues that would normally indicate he's ready to eat. It's clinical, stripped of instinct and warmth.

 

However, his hunger is great enough that he just gets on with it. By day two, he was eating the entire 70g pouch. I'm going to have to search harder for the green veg purees, but he loves all the fruit and parsnip, we'll revisit sweet potato, carrot and peas. I passionately believe that children need to learn beyond sweetness, the "honeyed tones" of the orange vegetables and fruit, that there's a whole palate of flavours out there to be enjoyed, even the faintly bitter and sour. Because he doesn't need chemo, hopefully the weaning process won't be too interrupted and we can progress to some baby porridge in the mornings.

 

Because it's all about progress. And control. This I can control - up to a point. And I'm determined to give both my children the best introduction to the exciting world of food out there, which means that in hospital, in this environment completely not of my making, I have to work harder to make this process enjoyable and fun and natural so that in the outside world we can continue.

 

Oscar undergoes the same fanatical attention. With his "harvest" coming closer, I feel he needs feeding up, making strong enough to cope with loss of life-giving, life-healing marrow. Luckily he's in one of his phases of willingness; so we go to Nudo and eat sushi because he's so pleased with himself eating seaweed and salmon. We explore the Chinese supermarket for lychees and dragon fruit and Chinese gooseberries. We practise "Tiny Tastes", a reward game to encourage him to like broccoli, avocado, peppers. Diet is something I can DO, I can control, I can keep us healthy and out of hospital by ensuring we all eat a rainbow. Maybe Sam was so busy inside the womb exploring spices and sourness and all the different flavours I could throw at him, he just didn't have the time to make sure his immune system was working. But food is medicine too, a medicine infused with love and family and wellbeing that I can administer like the doctors with their antibiotics, keeping illness at bay in the only way I can.  

Christmas and Everything After...

Christmas... How was yours? It wasn't too bad, considering... I can't say it was everything we ever wanted, although Oscar racing round the flat saying "This is the BEST Christmas EVER!", meant at least one of us was fully satisfied. We split the day: I went to the hospital in the morning and opened Sam's presents - he had an enormous sackful off the hospital - as well as ones we had bought; Matt went in the afternoon while I assembled our canapé dinner: I'm calling it "A Taste of Christmas TM." We drank champagne and opened presents and watched TV and it was as lovely as it could be, which is to say there was a bit of a gap and we couldn't fill it.

But now it's done and we can crack on with all that January has to offer. In 10 days time Oscar will hopefully be going for his bone marrow harvest (I feel a shade Mrs Coulter about this) and in 11 days Sam will get that all-important transfusion of stem cells which will hopefully travel through his currently on-the-dole thymus gland and become precious T cells which will give him immunity against most of what life has to offer. He'll never generate his own B cells, so he will probably have to have weekly immuno-globulin transfusions for the rest of his life, but that's half an hour and we can do it at home and abroad, so that seems a fair trade-off.

In the meantime, life progresses at the pace of a snail wading through molasses in flippers. When every day is the same - the only difference being whether you do the morning or afternoon shift with Sam - time drifts meaninglessly past. It's like being permanently stuck in post-Christmas week: there's no sense of what day it is or anything to differentiate it from the day before other than the weekly subcuvia (the t cell transfusion he has on Thursdays) and whether Oscar has done a poo... (Seriously. He goes every other day so it's quite a good event to keep track of. A poo clock. Every home should have one.) I prefer the morning shift: there's so much to do. Once you're in, Sam has to be fed and dressed, his bed changed, washed clothes put away, play mat put out... It can easily take well over an hour and before you know it it's 10:45am and Modern Family (the JOY of Sky!!) or House is on and away the day goes.

As does Sam... he's practising rolling from back to front, he's teething so the drool is near-constant and he's WEANING!!! And some... every day at 12pm he gulps down a 70g Ella's sachet of fruit or veg puree. So far he loves mango, apple, pear, parsnip and banana; peas, carrot and sweet potato much less so. But we have time, so so much time, for him to learn to love his veg.

And every day the doctors come in and listen to his chest and ask if there's a rash, is he being sick, has his cough come back and every day we say "No" and feel slightly fraudulent as Sam rolls and chats and kicks, but there is no denying the paperwork, those lines and numbers on paper that says Sam is not the child he's pretending to be. We try not to hear the screams from one of the older children in a room nearby, do not ever mention it to each other that someone else's child isn't having an easy time of it, is in seemingly unremitting pain; we seal ourselves off from it in our hermetic bubble because someone else's pain is just unbearable right now.

And so we trickle on, hoping every day that our particular roll of luck in this unlucky game of DNA dice continues, that we can be out of there in 8 weeks and home, creating another bubble, it's true, but at least one of our own making.