The Supporting Cast; Or, stand up and take a bow

Here up in Newcastle, as you might have surmised, it's very easy to live in a bubble. It is the flat and the hospital and Sam and Oscar and it is consequently easier - certainly emotionally, if not actually - to shut yourself down and pretend that everyone and everything outside of it does not exist, even if the torrent of texts and cards and presents belies that very notion.

BUT... yesterday I had a bad day. I suspect it is simply a consequence of the release of the pressure we have been living under. Now we have a relatively positive outcome for Sam and a rough timeline for processes, the stress of not knowing when/where/how has dissipated a little and in true me fashion, the walls came tumbling down. All I wanted was a hug from my mum and my sister and my dad and just to cry for hours. I achieved the latter; the former I can do nothing about for some weeks yet. But it reminded me just how important the supporting cast in this family drama has been. None of this shitty episode would have been bearable without them. I'm now, embarrassingly going to name and shame them: it's Christmas, we can't be together, but I can use this slightly public forum to give thanks for everything they've done, which is Christmassy in spirit.

Ma: Truly, we could not have done this without her. She now lives more than half her life in our house in our part of the world and has become part-time carer for Oscar, who luckily seems to have an aces time with her and sleeps outside her door till she gets up. It takes a lot to up sticks like that and look after an admittedly not really active 5 year old, but at least she's getting her drawing practice in. I suspect our house is cleaner than it has been in months, and that there is not a piece of clothing or bedding left unwashed and unironed, and any day now I expect a phone call incredulous as to HOW MANY jars of mustard there are in my cupboard, but the woman is a miracle. Our gratitude knows no bounds. Thank you Ma, we love you.

Elle: My sister lives quite far away but she has offered - and we shall take her up on this - also to move in and look after Oscar. She has always been there on the end of the phone for a good cry or to tell how fat Sam is or to send pictures of Libby, her daughter, in her latest sartorial fabulousness, which have been immensely cheering.

Our friends: All of you have been amazingly kind and thoughtful and it's really quite astonishing how many of you there are. I definitely don't send enough Christmas cards out. However, every last damn one of you has offered help with something, from Oscar play dates to food. Special huge thank yous to: Caroline and Bev, who have not only supported me hugely with mugs of coffee and cake over the last few months, but have practically adopted Oscar and also Ma, who is incredibly touched by your kindness; Helen, our neighbour whose bag of Lakeland goodies both practical and treat-y was super-useful; Jenny, my bestest friend who really wanted to bring me wine and takeaway in Chester hospital and come over and just hug me and who I really want to hug back; All those of you who have patiently listened to my rantings on the phone and let me talk cathartically about what's going on. All those who have responded to queries about things I need on Facebook and have helped out or who have donated to The Bubble Foundation, Thank you.

My family-in-law: who will also be doing a little part-time Oscar-ing and also for sending me my Christmas books early, which has been brilliant, because I needed those laughs so much and for the annual Christmas quiz because we can't be there to do it with them this year. But I will still win it.

 

The hospital staff: Without exception, they are unfailingly kind and professional. From the cleaners, whom Sam is fascinated by, to the nurses who tend to his every need and the play specialists who come and relieve us for an hour a day. And everyone loves him. And he seems to love everyone. Apart from Dr Heema who only ever seems to stick needles in his hand.

Oscar: He won't read this - just too much hard work - but he's taken on this strange 2-home, 2 carers temporary life with equanimity and ease. He has pretty much just gotten on with it and fitted right in. He misses Sam a lot and yet he doesn't moan and whinge about it, but merely sets about drawing yet another picture of us all together round a Christmas tree or dancing at a concert or lying in our beds (our walls are plastered and I'm running out of blu-tac.) We're really proud of him. He rocks.

Matt: Finally, my husband. He has been nothing but brilliant and kind and generous. From sorting out a decent place to live, schlepping up and down the motorway for hours to fetch Oscar, allowing me to buy a whole new hospital wardrobe just after I finished buy a new wardrobe (oh the pain on his face...), just generally sorting everything so I can focus wholeheartedly on Sam and Oscar. He is my hero.

 

If I've forgotten anyone, forgive me. It's nearly Christmas and it's been a long day. But know that you all have a special place in our hearts this Christmas and please set aside a weekend in mid-August when we will be having the hugest, most biggest, bestest 1st birthday/Thank you from the Dodsleys party Cheshire has ever seen. Because you're all invited.

 

Merry Christmas lovely people. We miss you. x 

Sunny Side Up; Or, a few bright things

Sunny side up; Or, a few bright things

It's not actually all doom and gloom up here. Admittedly last Monday, when they did a lungwash on Sam, was trying, to say the least. A hungry - make that hangry - 4 month old denied food from 7am until 4pm is not the best of company; add in a general anaesthetic and a canula and I could hear his yelling in Recovery from a floor away. The weekly subcutaneous immuno-globulin transfusion into his thigh is no picnic either, as the tube is quite short and it takes 45 minutes so he has to spend it being frustrated in his bed. I imagine once we start chemo and so on, it may get worse. (NB: We now have the news he won't need it. But at the time, you live life according to the negative, the no-news. It's the best kind, because the doctors, when they  visit, generally only give "positive" bad news. The negative "good" news - it's not XYZ - get buried.)

But there are bright spots. Such as...

1a. City centre living: I do not love the noise. I do not love the people. I do not miss or love the "buzz". But, sweet baby Moses in a rush basket, do I miss the food.... On our doorstep there's a Sichuan Chinese, two decent Indians, a Coop (like a rip-off of Chicken Shed), a Longhorns BBQ house, two Italians, a Thai/Chinese and a Peruvian right below our flat. Chester cannot offer this cornucopia; I am in Heaven. Truly. Every day I manage to find another treasure. Yesterday I found China Town and a Dim Sum restaurant to take Oscar (the 5yo) to. And a very aces gin bar that calls to me like a long-lost love. All of which has led to...

 

1b. Date night: When we have to take Oscar back after a weekend to the sugar-toting, anti-vegetable, anti-gro-clock (AAARRRGHHH!!!) ministrations of Grandma, (and one day she will pay for her lax oversight of his home life...;)), we have a date night to cheer ourselves right back up. It's like not having children again. I can't tell you how freeing it is.

2. The repetitive nature of our existence: This is an odd one, I freely admit. Our day runs thus: get up at 7.30am, shower, dress and have breakfast. Make a sandwich for lunch. Set off for hospital around 8.50-9am. It takes roughly 15-20 minutes straight through the middle of the city centre, like a maternal arrow homing in on the target. Get in to the ward, leave outdoor clothes and shoes behind and then scrub through every checkpoint till you get to your baby. Get him dressed, feed him and play until 5pm when he has bottle, bath and bed at 6pm and we're away. But I like that life otherwise does not exist; that my life is stripped down to these bare bones. Apart from Oscar, a necessary needed complication, it's amazing how little stimulation I need right now to get through the day. Just getting to 6pm every day feels like a major achievement, another day ticked off, another day closer to going home. In suspended animation, in limbo, this life is totally liveable. I would have been a champion envelope-stuffer. Or chicken factory worker.

3. Sam: Such a fat, smiley, chatty, active, alert, fat child that everyone fights to look after and be with. He is our good news story: he has survived this long without being really poorly, he continues to thrive. The dietician has put him on a diet, his weight gain is so outrageous. And today he rolled!!! Life feels weirdly a tiny bit normal.

4. I miss my life, my house, my family more than I will ever admit to any living person. Not one of you will ever hear from my lips how much I miss our life that I worked so hard to build in Cheshire and the people in it and around it, it is not my way. It is easier to pretend none of it ever existed than to stay in touch, find out what I'm missing, find out how much we miss and are missed. However, it also makes life very controllable at a time when control is completely not within my remit. There are no complications other than what is happening right now with Sam and Oscar. It's perhaps not what I would choose right now, but it's easier to cope when you're on your own. Says no-one perhaps apart from me.

5. Newcastle is a highly prosperous city in many ways. If I were Christmas shopping it would be very manna from heaven. As it is, it's just bright and eye-searingly irritating, but it is a boon to be able to dodge into a Primark or M&S or whatever as you walk home from the hospital without having to detour. City living again: dead convenient.

6. The Geordie accent: We went to uni in Durham and I forever associate it with good times and being looked after. I trust the nurses more because they are Geordie. The thoughts in my head have a Geordie accent. I end up mimicking as is my worst habit although it is merely comfort-speaking as much as chips and gravy (in a Newcastle accent, obvs) is comfort-eating.

There may well be more. Being of a naturally hard and calloused nature, each day icing over another layer, compartmentalising my life makes living it so much easier. This is what I am doing now and nothing else existing outside of it makes it very restful indeed. Emotion is surfeit; every day when I walk down the corridor to Ward 4 I am Tony Stark made flesh. I mentally don my Iron Man costume and discard all that is superfluous. But it's not all bad. Our child is going to be cured. And not everyone can say that unfortunately.

Finding our space; Or how to live

In the headlong rush to Newcastle, we are told the hospital can provide us with a flat to stay in. OK, we have to share a bathroom and kitchen with another couple but we have our own bedroom and lounge. I start thinking "holiday cottage" for the packing: towels, tea and coffee, a couple of ready meals to see us through as well as nappies, wipes, baby toys, Bumbo (because at 3 ½ months he's sitting up nicely), bath seat - you name it, we pack it. The hospital says we could be up there for a week or two for tests and assessment, but the nurse caveats this with "quite some time": read "months". The car is full. We are full. After being bombarded with more information than we can handle (at no point does one ever, being British, turn to the nurses and say "Woah back up there a moment, Sister. This is more than we can take. We don't know what you're talking about. Our child is HEALTHY." We just keep nodding and acting like this is totally OK, totally alright with us. Except it's really not), they take us to the flat. It's grim. It's beyond grim. It's where prisoners might be put to accommodate themselves to life on the outside. We have no bedding so we're sleeping on hospital linen and sheets which are cold and so starched that every time one of us rolls over, it wakes the other up. There are two TVs but neither work. There is a dirty old mop in the bathroom and the hot water pipes run straight up inside the shower so when you reach to pick up your shampoo, you burn your bum. There's no loo roll. 24 hours later, we can take it no more and Matt heads out to find a flat. We are working on the assumption with our new-found overflow of information that we could be here 4-5 months, so he finds immediately and thankfully a 2 bed flat in the centre of Newcastle, 20 mins walk from the hospital. It's fresh, new, clean and a refuge. 

Because that, it turns out, is really bloody important. Within a day, we have learned that you have to come back in the evening to somewhere nice. I sound ungrateful, but the hospital flat was somewhere you would want to end your days (I think of the old man in Shawshank Redemption who hung himself because he couldn't cope with life on the outside), not somewhere you find the resources to continue them.

And the other thing is our bubble. Sam's isolation cubicle. For the next 4-5 months we will live out our days in a room. The ward is indescribably cheery. Bright, clean, colourful and decked like all get out for Christmas. But he has a bed under a clean air-flow in a pressurised room and not much else. Slowly we learn the routine. Before we get to him, there's a change of shoes and a handwash. Then when you go in, you can't step over the blue line to your baby  before you've washed your hands, put on a plastic apron and done a 3 minute scrub in up to your elbows. You can't cross back over the blue line without at least antibacterial gel and/or a handwash. If you leave the room you have to go through the whole process again. Your phone, water, watch must stay beyond the blue line.  My hands start to break down with the constant washing and my eczema runs riot within 48 hours. He's only allowed board books with no fabric, none of his Lamaze toys or anything that won't withstand a 60°wash. His Bumbo has been deemed not hygienic enough. His 3-6 month clothes shrink within two days and we have to bring up his 6-9 month outfits. Gradually we add a Clinelle-wiped playmat with approved plastic toys and books, a washable bouncy chair. These make all the difference because it seems Sam is all about the standing these days. Changing his nappy involves gloves and freezer bags and conti wipes and more palaver than you would believe possible.

Your day shrinks to manageable half hours, like Hugh Grant in About a Boy, marked by episodes of Frasier, Friends and Modern Family. I'm starting to really like the look of oversize check shirts and combat trousers again. I might grow my hair back to a Monica. Every nurse or doctor that comes in to do obs or chat to you about Sam is both welcome as a distraction and unwelcome as they come with yet more information or diagnoses. And they all love Sam. LOVE him. He is the well-est child on the ward: fat, bouncy, chatty and unendingly smiley. The day nurses love him because he wriggles so much they can't get accurate readings for his oxygen saturation and blood pressure; the night nurses love him because he eats and then goes straight back to sleep. The doctors freely admit he is a puzzle because he is pink and thriving and healthy where SCID kids are grey and thin with bad skin and permanent diarrhoea. We tell them we feel like we have brought them a healthy child they are going to make poorly to make better; if we had had a typical SCID kid, we might be so much more grateful to be on this ward.  We get the distinct impression we've been really fucking lucky to have got him this far without serious issues.

You might wonder at our not staying the nights with him but it's not encouraged. First, they like parents to be well-rested; it's a long trudge and sleeplessness undermines your resources. Second, they want you to have showered with clean clothes every day. Third, it's a blessed relief not to have to wake up every 2 ½ -3 hours to feed the gannet. Our flat is situated between the cathedral with its quarter-hour bell chimes and the station with all the concomitant city centre weekend noise, but we hear none of it, so wearying is the daytime routine.

So slowly we settle into the groove of a rigorously clean, stripped lifestyle. We are quite literally stripped back to the basics, physically raw with the washing and cleaning, emotionally raw with the constant reminders of Christmas and family unity at every turn whilst we can't even allow our faces to touch our baby's head. We can't kiss him goodnight. We can't blow raspberries on his tummy to make him laugh. Because this Christmas, a snuggle from Mama or Daddy could turn him into that SCID kid we have so far escaped from. Keeping him well trumps all.

Scid-ding off the tracks

Here's a thing. You set out to make a baby and it all goes swimmingly. The baby is born and is healthy and grows up to be everything you envisaged - with perhaps more love of gore and zombies than you anticipated - but your beloved Son no 1. And then you are so impressed and proud of yourselves with this little piece of perfection you think you might try again. But it's not as easy the second time around: one miscarriage is devastating; two is fucking awful. So you start to get your head around just having the one perfect child and maybe trying again one day when everything settles down and then BAM! Some persistent little bugger gets through and before you know it, your Christmas is screwed with pregnancy hormones you know nothing about and suddenly you're trying to tamp down 9 months of increasing anxiety because, you know, we were just REALLY LUCKY the first time.

But the baby is born and is fine and is another piece of perfection. Hooray! We have done it again! We have increased our mark on this earth by two and we can stop there and know we are complete. Of course around week 4, wind hits and the baby cries constantly until you figure out new milks and bottles. Then he gets a bad cold which makes it hard for him to breathe and oral thrush which makes it impossible for him to eat. The paediatrician shakes his head and says that everything will calm down eventually. The doctors prescribe for the oral thrush which goes away but the baby is left with a cough. A cough which persists 24 hours a day, 7 days a week. A cough that means he can only sleep lying on my chest. A cough that means every precious video we take is accompanied by a background noise of him hacking away. A cough that doctors dismiss week after week as a floppy larynx, a 100-day cough, a bit of a nuisance. You mark the weeks - this time next week it has to be better, this time next week we will be sleeping - but the weeks slip by unremarkable except for the fact that nothing changes. You feel like you're slowly going insane through sleep deprivation and the fact that deep deep down in your bone marrow there is something deeply wrong here.

Then one day you finally get to see another paediatrician, one who listens and takes you seriously when you say you haven't slept for 74 nights and he organises scans and mri and ultrasounds and for a week you bring your tiny baby into the hospital every day for a new machine to look at the inside of him. In the middle of this, suddenly he stops eating, starts being sick and on the one day you're not due in hospital, you're there at 6 in the morning because you HAVE HAD ENOUGH AND YOU ARE NOT BRINGING THIS CHILD HOME UNTIL SOMEONE HAS MADE HIM BETTER. And they give him antibiotics and within 24 hours the coughing has stopped. And you sleep. And you start to think it's going to be ok.

But them they do blood tests and the MRI and bit by bit a picture emerges: A small thymus gland. A small spleen. A floppy trachea. None of these really make any impact but terms like Di George syndrome are bandied around. and then dismissed. And then they look at his blood and your world falls apart. The beloved shit-hot paediatrician become an increasingly articulate angel of doom who gives you worse news every time he phones: A small thymus gland indicates a lack of T cells. T cells fight infection. There are no immuno-globulins. They fight infection too. It seems Sam is lacking his army that fights off illness - he mentions SCID (Severe combined immune deficiency) but he's puzzled because Sam looks so well and shook off the cough so quickly - and we have to move NOW NOW NOW to Newcastle where we know no-one but we have to be for a week or two whilst they run more tests and keep him under surveillance. They want us there tomorrow but we have Son no 1 to consider and we can't go until the Monday.

Four days later we set off on the 3 ½ hour journey to Newcastle. It's a journey I want to get over and done with and never want to end. We arrive and we're swept into a world we never wanted to be a part of. And here's the kicker. From musing on the remote possibility that he might need a bone marrow transplant like a typical SCID kid, possibly, maybe, remotely, suddenly it's the reason we're here. It's a God-given certainty and we plunge straight in. It's like someone turned the telescope the other way round and the remote horizon is suddenly up close and in your face and threatening to smother you. So you take a deep breath and start talking donors and blood and T cells and immuno-globulins and B-cells and lymphocites and you're following it but not following because fucking hell, this is your baby and what the hell was he DOING on the day he was supposed to be taking care of this shit? And why are we talking about chemo and bone marrow and Christ allfucking mighty they start talking about his brother being a donor and right now we're not breathing, we're suffocating under a weight of information we have no idea how to process. And we're not going home. We're here for the foreseeable. It's right here in our faces and we can't retreat, we can only go forward. We never even really got to say goodbye to the life we worked so bloody hard to build. But it's gone, for the time being. Right now, right here is all we have.