Tag Archives: lch

“How’s Casper?” “He’s a dickhead.”

The person you’ve just bumped into and are catching up with, because you haven’t seen each other for ages, because, y’know, global pandemic that’s killed millions and kept people shut in their homes in an unprecedented way for almost two years, may well go all serious and slightly lower their tone of voice and say “How’s Casper?” after a little while, because, y’know, cancer. It’s nearly three years since he started dabrafenib, and, essentially, he’s fine (with lots of monitoring), and he’s also three (AND A HALF) and cute (and also has cancer) so gets away with bloody murder, so the response is generally slightly brutal and tongue-in-cheek. “He’s a dickhead.” “He’s an asshole.” “He’s a wanker.” And then they laugh, and it diffuses the mood a little, and you explain that he’s still on the same drug and basically in controlled remission and ‘fine’, whatever that means, and oh, he was just in hospital yesterday for an ultrasound / ECG / blood test, because we’re still checking him constantly in case it comes back and tries to eat him alive from inside again in secret like it did when he was a baby.

Or maybe an older lady who I don’t know from Eve will see him in the street and comment on his lovely curly blonde hair, “where does he get it from?” she asks, while looking at my straight, grey-flecked brown receding man’s hair, and I’ll have to bite my tongue to not say “oh it’s from his cancer drugs because he’s got cancer”, because it probably is. Simon his consultant calls it his ‘dabrafenib hair’. It’s extraordinary. Golden corkscrews pointing out in all directions. He’s very proud of it. Draws strength from it, like Samson. One day we might have to explain that it’s because of his meds and ergo because of his cancer, and then there’s a whole host of identity crisis questions that come after that – who would he be if he hadn’t had cancer? Are aspects of himself that he loves and takes pride in – like his amazing hair – only there because cancer tried to kill him?

This was meant to be a quick childhood cancer / LCH / Langerhans Cell Histiocytosis update. Because I promised I’d make updates in case anyone found this blog by googling LCH etc because their kid had been disgnosed with it, and they wanted reassurance that god didn’t hate them and things will be alright, and what does LCH look like a few years down the line?

Well, Casper is kind of OK. The future is unknowable – will he stay on dabrafenib forever, will the trial want to bring him off and monitor in the hope the LCH doesn’t come back, will the drug stop working all of a sudden because it’s still an unknown quantity, is this behavioural quirk because he’s three (AND A HALF) and a boy or is it a side-effect? We ponder questions like these a lot. We don’t have answers to any of them. The low-level paranoia and dread you feel never quite goes away. The side-effects on you as a parent can be brutal – I’ve been diagnosed with rheumatoid arthiritis (at 42!), which is almost certainly brought about / exacerbated by the stress of the last three+ years (arthritis being an auto-immune condition, immune systems being ravaged by stress). It’s under excellent control with medication, but, y’know, it’s another added complication to an already complicated life.

So yeah, there’s hope, there’s joy, there’s love, life goes on, etc etc. But it will. Never. Be. The Same.