Monthly Archives: May 2019

“Basically a normal baby right now”

That’s a phrase I use a lot when people ask about Casper. I just don’t know how long it will last.

I cycled 28 miles with him in the trailer at the weekend, accompanied by my friend Jon. We stopped and had a little picnic halfway through. It was the first trip of more than 5 miles Casper had done in the trailer, and probably only his third or fourth overall. He made happy little noises from behind me for some of it, and slept for much of the rest.

Casper is still well. Still on dabrafenib twice a day. The drug company are apparently not accepting anymore compassionate cases (how Casper is receiving treatment) as they’re about to take it to market. It seems likely it will get approved by NICE and then be available via the NHS. I have no idea how long that process will take. The drug company should keep supplying it to Casper on a compassionate basis until that process is complete, and may even keep on supplying it to him afterwards. I don’t know. The delivery method is due to change though – from a powder that we make into a solution into a semi-soluble tablet, which isn’t meant to taste as nice. Not looking forward to that, but I’m sure we’ll find a way to cope.

What’s in the future? Hopefully keep him on dabrafenib for as long as possible. The best case scenario is that he stays on it until late childhood, when the disease could have burnt itself out. But there’s no certainty, either clinically or in the supply chain. There are apparently 16 children in the country on this medication for this condition, and none have been on it for very long.

Hospital visits are less frequent, but far from rare – he’s in today for blood tests, ophthalmology test, and an x-ray. Next Thursday Helen, his lead consultant, is down from Bristol for her clinic, and wants to see him. Sadly I have meetings all day so can’t justify skipping work; it’s always nice to see Helen because she’s generally so positive, and we need a dose of that every so often.

But generally we’re OK. Casper’s OK. Nora’s 4 and 1/2 and ready for school, so sometime’s hard work, but basically OK. Life goes on.