Well antibodies have started, and oh boy have they started. We arrived at the hospital shortly before 9am on Monday, late as usual. Adam went straight down for an EEG, and then had another bucket load of blood taken. They take serious amounts of blood in this place, it’s little wonder a lot of the kids end up needing transfusions.
Things started off well enough – we went to the playroom and Adam played with the crane, the train set, he fished a German board game out of one of the cupboards and we played it using our own made up rules. The IL-2 injection, the first of this week, was done in a trice, we have that off to a fine art now. Adam takes a gauze strip and the minute the needle goes in he’s on with the gauze applying pressure. I then take over whilst Adam sorts the plaster out which he then places expertly over the minute puncture wound. Job done. They have a stash of Disney plasters which they’ve been using, and generally they’ve gone down okay with Adam. However, he wasn’t entirely happy at sporting Minnie Mouse on his right thigh yesterday. Mind you, he hasn’t taken her off yet …
Adam was hooked up to the supporting medications which had to run through for several hours before the antibody could be started. Fluids, morphine, metamizole, and ondansetron. At 2pm the antibody was added to the cocktail. They only access a single hickman line for all the IV drugs, the other is left free for bloods etc.
There are all manner of potential responses to this therapy, Adam’s has been almost continuous sleep, fevers in the high 38 to low 39 degrees, blood pressure as low as 65 / 25, weight gain of more than a kilo due to fluid retention. And we’re only 1.5 days into the infusion. On a trial designed to be more tolerable than the U.S. antibody treatment!
We weren’t under any illusions about the severity of what we were sending Adam into. We also knew to expect things to be particularly bad given this is only the first cycle. Adam’s body hasn’t yet had chance to become accustomed to the treatment regimen, something that tends to happen with most children progressively as they go through each cycle.
All the same, there’s no mitigating how hard it hits you when you begin to witness what your child actually has to go through. Again. On top of everything else you’ve already put them through. All in the name of love, and of hope. With the ultimate of best intentions.
“You’re a gorgeous little boy, Adam” I told him earlier this evening, during one of the brief periods during which he was awake. “I know that already, Dad” he replied earnestly “You’ve told me, like, a million times, before.”
For some of the side-effects it’s difficult to know what’s attributable to morphine, and what is caused by the IL-2 / ch14.18 itself. The sleeping and general malaise is definitely the morphine though. They take an approach here that the dosing starts high enough and early enough to prevent pain (in the majority of children) before it presents itself. Consequently Adam is on 2ml per hour continuously. He has had no pain whatsoever, but part of me would already like to see whether we can lower the morphine a little and get away with it. The upside would be Adam more awake and alert, more freely able to go to the toilet (front and back). The risk, of course, would be breakthrough pain that could not be instantaneously controlled by increasing the morphine back up.
The doctors are staunchly against lowering the level until Thursday at the earliest, especially considering this is just the first cycle. I suppose they’re probably right, they’ve certainly got more experience of this than I have. It’s just tough to watch your child go through what Adam’s going through and not wonder about such things.