Monday, 15 October 2012

Fear ...

Adam hasn't improved any. His fever comes, goes with paracetamol, then comes again. His leg still brings extreme pain when moved, his shoulder has allegedly (according to Adam) got worse again, though I'm not entirely convinced about that. Nothing has shown up yet in either blood or urine samples, but he didn't produce the required stool sample until earlier this morning. I'm not expecting anything positive to show up, this feels like neuroblastoma's doing to me. Of course I hope I'm wrong. Nothing would make me happier than to be wrong and all this end up being a combination of infection plus side-effects of sorafenib. But I'm not wrong.

This morning we got Adam's most recent urine results measuring his catecholamine levels, a tumour marker for neuroblastoma. The levels have gone up a lot, and they were already way above the normal levels. I say most recent, the sample was from October 4th so we can only hypothesise where they're at now. All samples from South West London are sent to St Helier for analysis, and there is a 10-day turnaround. At the hospitals we've been to in Germany and the US results are obtained the same day. Don't ask me why it's deemed acceptable for it to take more than a week to process samples over here, I'd only be guessing. His LDH, a blood serum tumour marker, is also the highest it's been since we started tracking it over a year ago; it's way too high.

We need to figure out a plan. And it really feels like we need to do it quickly. At the moment getting Adam fit enough, through a combination of paracetamol and pain relief, to put him on the first available flight to the US is looking like our best option.

Thursday I was wrestling with Adam in our front-room and he was throwing me on to the sofas. Friday he was out in the garden playing football with Jake. In reality just a few days ago, and yet in my mind it seems like light-years ago now …

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