So today is two weeks into dabrafenib, the gene inhibitor. I’m at work and Em and Casper are at hospital for his weekly check-up. She keeps texting me numbers that make no sense: his haemoglobin is 125. His platelets are 341. His albumin is 47. A week ago they were 112, 257, and 37 (or thereabouts). His symptoms have essentially disappeared (to be replaced with horrific, toxic shits, and a runny nose; we can deal with that). He has found an appetite (scrambled egg for breakfast today) and gained 400 grams in a week after the initial loss when his normalising albumin levels made him piss all the wrongly-distributed fluid out of his body (that’s what we think happened).
A few days ago a photographer came round to take pictures of Em and kids for a project she’s doing on how motherhood changes women’s relationships with their bodies. We’d commissioned her to do a post-birth shoot when Casper was just a week or two old, and she captured some lovely images of us together in those early, pre-cancer days, so when she asked Em (fully aware of Casper’s illness) if she’d pose for this project Em agreed straight away – not something she’d have been OK with doing pre-motherhood at all.
Anyway, that picture at the top is one that Gaby took of Casper the other day. Obviously it’s been processed and edited, but he’s a pink baby in it. It feels like he’s never been a pink baby. He has blood, at normal levels. And he’s so much more cheerful and lively, too. Problematically so, I suspect, in future; there is a glint of delirious mischief in his eyes, especially when he’s interacting with Nora, that makes me fear for mine and Em’s sanity over the rest of our lives…
Our lives are still difficult, despite this transformation. Normal life goes on. Home insurance needs renewing. Grand Designs gets watched. CDs get bought and not listened to. Vomit is cleaned up. Medicine is administered. Nasal-gastro tube feeds are set-up. It is different, but it is mundane and commonplace. Mostly. He still doesn’t sleep; if the steroids have worn off then the cold he has is waking him. Nora also is not sleeping – she finds her way into my bed almost every night at the moment, a hangover of all the disruption and upheaval and upset of the last few months now manifesting, probably. It had to at some point.
He will have this disease into childhood. He will be able to walk and talk and understand and ask questions. What will he ask? Will he ask anything? Will it be so mundane and commonplace that he doesn’t think about it? I don’t know what’s better. Or worse. We know another little boy with a very rare disease. How does he cope? He runs and shouts like any small boy.
There is also, at the back of my mind, the worry about what the hell Brexit will do to our situation. Talk of medicine shortages is petrifying. The consultant in Cambridge who’s the leading expert on LCH in the country is probably from the Netherlands, judging by his name. The drug company is in Switzerland. The research project running the gene therapy trial (that Casper’s benefitting from but isn’t part of) is run out of Austria, I think, and almost certainly has EU funding behind it to some degree (I used to work in research communications, so I know how critical EU funding is for so much medical research). At the very least networks and shipping lines are involved. I very vocally voted remain, and the prospect of this shambles threatening my child angers and scares me.
Big thanks to Gaby for the photo. Her work is beautiful, and you should look at it: www.gabysweetphotography.com
Sick Mouthy 