Adam’s latest chemotherapy was an odd affair. For the first time ever (literally) he had a severe adverse reaction which manifested itself in him spending the early hours of Sunday morning throwing up at regular (short) intervals. It began, according to Adam, when he got up too quickly out of bed to use the toilet and that made him feel sick. What’s beyond doubt is that it didn’t stop until well into Sunday.
I use the word ‘odd’ because we have seen Adam go through eighteen rounds of chemotherapy before this one. On a rough calculation that equates to around 90 days of chemotherapy, or on average 1 day out of every 5 since he was diagnosed last July. I could prattle on some more – I’ve got Microsoft Excel open alongside this – but (hopefully) you get the point I’m trying to make. He’s had a lot of chemo. So I guess we’d got a little blasé about it, or as blasé as you can about poisoning your own child. We’d even discussed and seriously considered the idea of taking him from hospital to Birmingham for his cousin’s 18th birthday party, though we eventually decided against it. Stupid bloody parents.
Apparently it wasn’t the first time he’d had cyclophosphamide, news that came as a surprise to both of us as it certainly didn’t ring any bells., He’d has it twice before as part of the induction therapy cocktail of drugs that were given between Day 0 and Day 80 (protocol speak). But those early days (even though that’s a three month period) were, are, and forever will be a complete blur. A whirlwind. Living on the emotional edge. Three days of chemotherapy, seven days off (or rather in Epsom General with fever, constipation, and general malaise). And repeat. Day 0, Day 10, etc. mark the start of the next cycle. Day 40 is half-way scans and Day 80 is end of induction therapy with more detailed scans (and in our case the devastating news that Adam still had lots of disease).
The biggest problem with Adam being sick wasn’t so much the vomiting itself. He doesn’t make too much of a song and dance about it (as opposed to his sister who HATES being sick and fights it as long and hard as she possibly can before the inevitable happens). The biggest problem was that it completely trashed his appetite and the remainder of the week was a slow and gradual climb back up from eating nothing to almost full portions again.
Despite the eating problem Adam was determined not to miss out on the chance to enjoy the wintry weather. On Tuesday when the snow came down hard he told me he was going to go outside once it had stopped “because then there’ll be the biggest amount to play with". In truth I thought he said it because he wanted to go out but at the same time didn’t really feel up to it. I should have known better than to doubt him. As darkness descended he donned his hat, gloves, coat and wellie boots and out he went. Adam’s always had an amusing style when it comes to outdoor play, whether it be sand, sea or snow. And so, despite spending the previous 48 hours alternating between his bed and the sofa, he sat in the snow, he knelt in the snow, at one point he even stuck his bloody head in the snow as if shaping to do a headstand! I did think he took things a little too far, however, when he pushed his Dad over and covered him with freezing cold snow. In the ears and up the nose, not a good combination.
On the Monday after chemo Adam began a week long course of IV GCSF to stimulate his bone marrow in preparation for stem cell collection. Which on Monday wasn’t much of a big deal; our community nurse came, did the infusion, and went on her way again. Tuesday was a little more problematic but the infusion was in the morning and at that time although the snow was coming down quite heavily it still wasn’t as bad as it was going to get. Our nurse lives in Sussex and having returned to the hospital after visiting us she left for home at 2pm and arrived back at 10pm. One of many with similar stories I’m sure. Somehow the team managed to get through to us every day. There was no way they weren’t going to – no matter how much walking was involved. We’re incredibly grateful and lucky to have such a wonderful team of nurses who look after Adam when he’s at home, and last week only served to reinforce that.
On Sunday we took Adam into the Marsden to prepare for the third stem cell collection. To recap the previous two had yielded just over 4 million cells. Whilst this is plenty for transplant after high-dose treatment, the ideal number to return is around the 3 million, leaving precious little remaining should more be required at a later date. The expectation is that despite more MIBG, high-dose and antibody therapy Adam will emerge late next year still carrying a disease burden of some magnitude. Without stem cells treatment options become ever more limited. I was never comfortable having only 1 million left over, or splitting them into 2 x 2 and going through transplant with the bare minimum. So after some pestering of discussion with the doctors we agreed to attempt stem cell harvest numéro trois. There isn’t a magic number that we need, and we know from experience and blood counts that we’re never going to get an abundant supply. But 3 x 2 is much better than 2 x 2.