A week of dabrafenib

Casper is now genetically modified, and has been for a week. So far, this seems to be a good thing.

The last week or so before we went to Bristol on Thursday were tough; Em and I were both struggling with intense anxiety, and not treating each other well as a result. Casper, clear of chemotherapy by two or three weeks, was definitely below par, and we were worried the LCH was beginning to manifest again. His liver and spleen were swollen.

He was still going through blood products at an alarming rate of knots – he had a platelet transfusion on Wednesday ahead of the Bristol trip, and had another one on the Friday after Bristol because the Wednesday transfusion hadn’t affected his levels at all.

There had been a couple of alarming vomit episodes, too; flecks of brown after evacuating his stomach contents. Disquieting to see, but not so medically – dried blood, almost certainly from his nasal-gastric tube scraping his insides, and his low platelets. Only a concern if it happens regularly, or if the blood is fresh and red.

When we got to Bristol we argued in the car park, Casper strapped to my chest, with such aggression that an off-duty police officer stepped-in. I burst out crying and we told him our situation and he, very rightly, told us we need to look after each other more than ever right now, and sent us on our way. I wanted to hug him and thank him. A low point not just of this ‘journey’, or our relationship, but of my life. As if somehow this whole thing is anything but the lowest point of my life. (It is. It is despicable, what it does to you.)

Casper had a good first weekend on dabrafenib; his sister’s 4th birthday weekend. Making it up is complex – it’s a powder in a stick, like sugar for your coffee, and you need to mix it with water in a rigid shaking-and-rest routine – but Casper takes it well, and we’ve managed to get the timings manageable (it needs an empty stomach – difficult with a 9-month-old who needs feeding up via a tube right now).

On Monday he had a check-up in Exeter, and when his blood results came back I felt dizzy, almost sick. They were good. Not just good for Casper, but (almost) good for a regular, non-sick baby. His platelets were over 100, having been 11 before both transfusions the previous week. His liver and spleen had receded significantly. Corrine walked past, looked at him, and said “from here he looks good, really good”. He did. He does. He has been 10%… maybe 20%… more Casper… since starting on the gene therapy, even after less than a week. Brighter, more energetic, happier. He had lost half a kilo in a week, which is a concern, but right now, it feels, a little, as if we have our boy back, just a bit. For a while.

Because this may not last. We had no idea what to expect of dabrafenib before Thursday, whether there was a percentage chance of it working or not, and we still don’t know how things will pan out. We did not expect it to be a magic bullet. We know it’s not curative; it only switches off the disease for as long as you take it. He still has cancer / LCH, and he will for years to come, in all probability. There are side effects, but they seem to be no more severe than those of the chemo and steroids, at least so far.

I want to be positive, to celebrate and whoop with joy, but I cannot. Cancer is still there, tainting everything. The top level of worry has evaporated a little, but other anxieties encroach to fill the space it left, and the underlying blackness that is the knowledge that your child has cancer remains. I suspect that even after remission, all clear, years free of cancer, that it will still remain. An alcoholic who doesn’t drink is still an alcoholic, even if the symptoms are gone.