Saturday, 11 February 2012

The week after the week before ...

I'm back with another update after my self-imposed break from blogging, tweeting, and face-booking. Which, incidentally, was because there were people who needed to be told what was going on with Adam before I started saying anything publicly about it, and until we'd had the MIBG scan it would've been largely pointless to say anything as we really didn't know what the situation was. To some extent, of course, we still don't really know.

Adam has had a good week. We've all had a pretty good week. On Sunday Adam, Jessica and myself went out and played in the snow for a good hour or so. Adam loves plonking himself down in the stuff. He's the worst of all opponents when it comes to snowballing, shows no mercy and calls timeout every time he takes a single direct hit himself.

Adam's bone marrow results from Vienna are still not back, I've no idea what's caused such a long delay this time round. The good news is the results from Cologne are back and there were no GD-2 positive cells in either sample. So another plus, though I believe the tests they perform at the lab in Vienna are even more sensitive so we continue to wait and see on those

The team at the Marsden have now looked at Adam's MRI scan, and re-examined his SPECT MIBG images alongside. Obviously, they can see the enlarged lymph node (they are more committal than the German doctors on what it is), but they've confirmed there's nothing on the SPECT that correlates with it. Not much else to be said now as far as those two scans are concerned.

The repeat MRI will be done sometime in the next fortnight. If the lymph node gets any bigger it would be visible on an ultrasound, but on balance they've decided to do an MRI. I wouldn't have been happy with anything else so that's good … no having to make a nuisance of myself. Well no more so than usual.

In terms of his general health Adam's been doing pretty well. Out in Germany, and a couple of times since we've been back he's had odd nights of broken sleep which is not something we like because that was one of the first signs that something was wrong way back when - not that we picked up on it at the time. But this time round we've put it down to him getting cold, as his duvet's been off when we've gone into him, and for that last four or five nights he's slept like the proverbial log. He's eating well and at the last weigh-in was 27.7 kilos which I'm pretty sure is the heaviest he's ever been. He certainly seems more chunky every time I look at him, and I wouldn't want to be carrying him very far these days.

The 13-cis-retinoic acid is doing it's stuff again, making Adam's skin dry, cracking his lips, and giving him glass eyes. His dose has increased to 160mg per day due to his weight increase, but as the capsules come in 20mg or 5mg he's actually gone from twelve capsules a day down to eight. Not that taking pills or capsules is an issue for Adam. He freaks me out sometimes how he pops a good sized gel cap in his mouth and then proceeds to start talking with it in there. I'm offering his water up but he's not the least bothered about getting it down quickly. Sometimes with smaller pills, like anti-sickness and antacid, he'll even decide to take two or more at a time.

The effects of the retinoic acid seem to be more pronounced the longer he stays on it, maybe it's some kind of cumulative effect. Now we're no longer going out to Germany for antibodies, he's back on a four-week cycle, two on and two off. For all that he doesn't seem too bothered about it, and ironically the only time he complains is if it stings on one of the infrequent occasions he puts cream on his face.

Adam has started back at school. Last week we didn't even mention it to him, but this week he started going in after first playtime and coming home before lunch, then staying at school for lunch and coming home at the start of afternoon lessons. On Friday he wanted to stay for lunch, but then come home instead of going out for second playtime. And he wanted his Mum to bring his boots so he could walk home with her and have a snowball fight. Alison, of course, duly obliged, and Adam got his wish.

This week is half-term, but we have no plans. It's nice to have some time at home without thinking about our next trip to Germany in a week or two, which has been how we've lived since the beginning of August last year.

I'm still trying to figure out what we do next; if nothing materialises as a result the whole MRI episode Adam will finish 13-cis-RA in May, so we've got until then to get a plan in place. Next Thursday and Friday I'm off to a neuroblastoma symposium in T├╝bingen (near Stuttgart), so maybe I'll get some inspiration from that. And in the back of my mind I've still got to think about what happens if this next MRI shows up more than the last one ...

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