Hospital first thing to check bloods, then to the Phoenix to see the Christmas theatre production with the kids. Casper, at 10 ½ months old, was rapt for 45 minutes (and quietly fed for the next 30 minutes), and so good that a mum behind us commented on how well behaved and interested he was.
Then we rushed straight back to the hospital for more tests. Four hours in the hospital in total. Not quite how you’d want to spend the day before Xmas.
Nora slept until 6:40am, in her own bed (following some coercion – “Father Xmas can’t leave presents if you’re not in your bedroom, because he won’t know you live here. No, I’m not sure what time he’ll come – it could be 7am…”), and opened her presents in the most calm and patient manner you can imagine; removing them one-by-one from the sack, piling them up, insisting on mummy and daddy and Casper opening one each for every one she opened, etcetera, etcetera. Almost freakishly calm and collected, actually, given how excited she’d been. I guess surprising you is what kids do.
Boxing Day was calm and quiet, with nothing organised. I think we might have gone for a walk, but I can’t remember where. Time stretches and compresses at Xmas anyway, and days bleed into each other. The same happens with cancer, and my memory is so shot now that I barely trust myself.
I took Casper in to hospital for 9am on the 27th to do bloods, specifically to look if calcium was OK, so that we could get the green light to go to London for two nights, something Em had suggested and booked as soon as we started the dabrafenib treatment, just in case he was as OK as it seemed he might be.
Bloods normally take about an hour to get results if you tag them “urgent urgent waiting” for the lab, so in a best-case scenario I’d be out by just after 10. But of course nothing ever happens with 100% efficiency, especially not in hosoital, and we needed a letter too, to give to any London hospital explaining Casper’s illness and contact details for his consultants, should the worst happen despite fine blood results.
So it was almost 9:30 by the time bloods went to the lab, and practically 11 by the time results got back. His calcium was not only stable from it had been on Xmas Eve, but down, to regular baseline normal. A whoop of joy, a hug for Lou who delivered the good news, and we were on the A303 inside 30 minutes (just about); Em had been too paranoid to pack the car before I phoned the actual results through, even though all the oncology team had been working on the assumption that we’d be fine, but the bags were packed and we just needed to load them, ourselves, and kids, and turn the key in the ignition.
Traffic on the A303 was horrific, and it took 5 hours to get to London, which resulted in anxiety as to what to do that evening; had we arrived at 3pm as planned we’d have headed straight into the city, but arriving at 5pm was really too late to do that for the kids. So we had a McDonald’s sanctuary tea, and retired to the hotel room to watch a film together.
Our first full day started at the Natural History Museum for a couple of hours. Overwhelmed by people and dinosaurs we fled to a nearby Leon for lunch, and then headed back so Nora and Em could ice skate together, which they both clearly adored. Then to the Lego shop (amazing), tea in Leicester Square (Shake Shack; disappointing compard to the memory of NYC many years ago), and back to the hotel for bed.
The following morning we did Tate Modern so Em could go to an exhibition (Anni Albers, a Bauhaus alum who did textiles), lunch, and then Hamleys (the mark-up on everything! the chaos!) and Regent Street, before heading back to the car and driving home at 5pm. It was busy, it was occasionally a little fraught, but it was good. We were a family, away from home, away from hospital.
I took Nora to see the new Mary Poppins film, which prompted a raft of almost unanswerable questions (“where is the person with the orange hair who gives them food?” “the little boy in this film is the daddy in the other film?”). She loved it, and we have a list of other films to go and see together over coming months (thanks to trailers). I am beyond excited for the second Lego Movie.
Heather, the CLIC social worker, has won us an award of a free 4-night stay at a castle in Dorset, which belongs to the Landmark Trust. Each year they offer 40 or 50 free stays to deserving families; this year Heather applied for two families (including us), and got them both. So in March we’ll spend a week in a castle with some friends (who’ve also been through a shitty, cancer-spoiled last 12 months). Nora is, understandably, very excited.
A local charity (very local; they’re based about two streets away from where I grew up, and one time when they were in the ward to talk to Corrine I realised I recognised the family) who provide ‘wishes’ to local children with cancer (they lost their own son to the disease), got in touch to say they were in operation again after a short break, and what would Casper and Nora like? More good news.
Yesterday (Friday) we went to visit Little Bridge House near Barnstaple, part of Children’s Hospice South West, to see about possibly having some respite there. The word hospice, when it was first mentioned that we’d been referred by the oncology team, was as upsetting as the word ‘cancer’ was at first; was there something we weren’t being told about his prognosis?
We had considerable trepidation about visiting; do we belong there if Casper is OK at the moment? Is it healthy, for Em and I, to spend time around kids who are actually dying? Would those families resent us? Are we deserving? We have been referred, considered, and accepted, so that last question is kind of answered for us, but the others would need us to actually go and see for ourselves.
The long and short is that Nora adored it (free softplay, all the time! A team to look after siblings, and do things like baking with them! A magic sensory garden to run around in! A jacuzzi!), and our contact people seemed genuinely really lovely (a pre-requisite for working there, you’d imagine), so we will take advantage at some point. If it gives Em a couple of hours free to sit somewhere quiet and read a book, it is worth it.
Casper continues to be well; his bloods are great, he is putting weight on, weaning well, and eating like a baby born at 10lbs 2 at last. His hair is growing, he is increasingly energetic and vocal, he seems likely to crawl forward any day now (he can go backwards, and bum-shuffle forwards), his fine motor skills are good, and he continues to smile at and charm almost anyone he meets.
Which would make you think that life is easier, right?
It is Casper’s 11-month birthday today. He still has cancer, even if he essentially has no symptoms right now. The anxiety and stress and worry has not disappeared; the calcium thing basically induced panic in us at the prospect of him having to come off dabrafenib, if that was determined to be the cause. We will, at some point, have to deal with coming off this amazing drug and letting Casper’s body fend for itself, before, potentially, inflicting even stronger, more toxic, more unpleasant chemotherapy upon him. When he’s been through so much already.
Mine and Emma’s relationship is in the worst state it’s ever been. The day after we got back from London we argued about nothing and everything until we essentially both got so worked-up that neither of us could cope, and I lost it, ending up punching myself in the head out of frustration and fear and panic so much that I now have a spectacular black eye. Em’s dad came round and we found some kind of equilibrium. I had my first counselling session just before Xmas and my second on January 3. It’s too soon to know if it will help but I am positive. Because Casper’s a baby, we don’t get any time alone. Having a baby is a terrific but dealable-with (just) strain on a relationship at the best of times, but when there is so much other anxiety and fear, constantly there, beneath the toddler emotions and the baby necessities and the family logistics that are already more than enough to deal with, it stretches you and stretches you and stretches you until it feels like you have broken, like there is nothing less. I see friends without children and sometimes, just for a split second, I’m jealous. I see friends with only one child and I wonder sometimes, just for a split second, if we somehow brought this on ourselves, if we should have stuck with one.
And then I look at Casper, and he smiles, and makes that noise like a dinosaur, and squeezes his eyes shut, and I think… not that it’s ‘worth’ it, or that it’s somehow OK (because it’s not, it’s fucking awful), but that… I wouldn’t be without him. Not ever. I wouldn’t be without him, or Nora, or Emma. Or the cats. I’d shatter. We’ve spent 17 years building a life together, and cancer is doing its best to destroy that life. I do not want to let it do that. Our relationship was not perfect before this happened, but it is one of the things in my life that I am most proud of. I want to be a good husband, a good father. I work hard at being those things, harder than I do at my career or pretty much anything else I’ve ever attempted in my life. I get it wrong a lot. Who doesn’t?
I can write on here, and open up about our situation to a stranger, but I’m not always the best at talking to Em about my feelings. My dad’s not an emotional talker, and neither are my brothers (which has caused serious problems in recent years), and as unlike as we all are in many ways, we are still very alike in others. I’ve spent much of the last six months being positive – my natural, default position – and keeping it together. But what we’re going through is awful. I’m not surprised I broke. Other people have told me they’re not surprised either. I suspect it won’t be the last time. I hope it was the worst.
A word on my wife (I’m a little sad that it no longer feels so weird and funny to call her my wife instead of my girlfriend, but it has been nearly nine years), which I’ve been meaning to write for months:
She is one of the most amazing people I have ever met. And I once met Darren Day. She is incredibly intelligent, intensely capable, fiercely moral, beautiful, sexy, driven, strong, and committed. The effort she put in to ensure the kids had a great Christmas is unbelievable; I’ve barely had time to think about Christmas. The level of activity she has kept up – handling insurance claims, organising hospital visits, booking car services, renewing house insurance, washing clothes, breastfeeding and bed-sharing a baby, always, always organising, planning, researching, plus reaching out and helping other people (arranging for me to deliver food to someone in hospital; reassuring other parents of LCH kids online), booking hotels, breastfeeding on tube trains, doing a 5k run on Christmas morning – over the last six months, is astonishing. I admire her more than anyone else I’ve ever met. She is amazing.