Week two of this, the fourth, cycle of antibodies started precisely the same way as the previous. Adam got hooked up to the supporting meds during the course of the morning, and around 2pm the antibody went on. We didn't get into our room until late afternoon, as it was only vacated that same morning, and needed to be cleaned. Almost as soon as the antibodies had started to feed their way around Adam's system, he began to get the same redness and swollen look that he had during the same day on cycle three. The difference this time, of course, was that it wasn't completely unexpected and we knew if it continued to follow the same pattern it would only last for less than 24 hours. As it was the reaction was not as severe as last time, although Adam did get a fever and require IV paracetamol to bring it back down again. At 7pm he suddenly flaked and fell fast asleep, again not dissimilar to before.
The following morning his appearance was back to normal and he was back in good spirits. Through the course of that day, and the following morning, his novalgin was reduced in steady gradations from 2ml/hour to 0.5ml/hour and eventually switched off. Early Wednesday afternoon the fluids were taken down, he was transferred to a portable antibody pump, and we were told we could leave. Or rather in his own inimitable style, Doctor Lange stood and waved at Adam and said "Bye, bye." We decided we'd stay until after tea just to ensure Adam had no adverse reaction to switching to the portable antibody pump, nor to taking oral novalgin and ondansetron rather than having them intravenously. He didn't, so by Wednesday evening we were all back at the house reflecting on what had been just 48-hours as an in-patient this time. As Adam himself said the following morning, "I can't believe I'm not in hospital."
I still don't understand why Adam has never, ever, had any pain whatsoever from the antibody therapy. What is it about his body, his biology, his make-up, that means he doesn't react that way? He is the only child we have known since we have been coming out here who has felt nothing at all. And the fevers, whilst all around him where regularly getting to 39 degrees and above, Adam was struggling to muster a 38.5. Apart from Monday, the first day of antibody infusion, he hasn't needed paracetamol during this second week. The only reaction he does get is nausea from the IL-2 injections. During the first week of treatment it gets steadily worse, to the point where on Friday, for the second cycle in a row he has thrown up four or five hours after getting his injection. I think next time we are going to give him oral ondasetron on the Thursday and Friday of week one - Alison's suggestion, and it's a good one. Whilst it's great that he suffers so little with this treatment, I am minded to think it's also a bad thing that he tolerates it all so well; that somehow it can't possibly be doing it's job properly without more collateral damage. But, of course, I don't know. Nobody knows.
On Thursday we went up to the hospital for IL-2, and ultrasound. Doctor Lange did them one after the other and we weren't in very long. The ultrasound is more of a formality for Adam these days, as required by the protocol. It checks for potentially dangerous fluid accumulation around major organs caused by capillary leak syndrome; but it's obvious (and was confirmed by the ultrasound) that Adam has no such problems. On Friday the hospital visit was even swifter still. Adam had breakfast at the house before we went, and we had bloods taken, IL-2 injection done, EEG completed, and were on our way home again all within an hour. Of course, we had a second, unscheduled visit to the hospital later on Friday but even that proved to be less trouble than it might have been.
Once or twice during the latter part of the week, Alison or I have commented that Adam isn't doing much, not getting a lot exercise during the day. It then falls to the other to point at that ordinarily on this treatment children would be connected to a drip stand and doing well if they were able to make a couple of visits to the playroom during the course of the day. Sometimes it's not so naturally obvious to keep things in the right perspective.
Yesterday we went into town, and took a walk to Greifswald Christmas Market which now occupies the main square until the weekend before Christmas. Adam had a few rides on the little fairground attractions, and thoroughly enjoyed himself. We've not had snow on this visit, but it has been pretty cold, averaging around 3 or 4 degrees I guess. Ironically the reading on the van was 9 degrees yesterday when we went out in the morning, but it's the first day there's been a really biting wind and it felt much colder for it. I'm not so sure I'm looking forward to a time when the two, freezing cold air temperatures and biting wind, come together. It's difficult to get the right balance of clothes, as the house and hospital are both nice and warm. We're expecting it to be even colder when we're out here next time over Christmas and New Year, with a strong likelihood of snow. We've got the winter tyres on already (a legal requirement out here during winter), we've got snow chains to put on if necessary, we've go a portable shovel in the boot, and we've got our thermals at the ready. So bring it on.
For those of you not following my tumblr feed. Why not? Oh, and here are a few recent photos of the main man himself …
Bye for now, talk again soon.