Its been a couple of days now since we got out of hospital after completing the last cycle of TVD. Adam had been on continuous IV chemo for 48 hours and as usual he didn't want to do much other than stay in his bed. But once the lines were off he was off too - running noisily round the ward. Its one of those odd situations; you spend two days encouraging him to get out of bed and do something, and then if you're not careful you find yourself telling him to calm down and stop running about. It's a hospital for goodness sake. Full of sick children. The nurses are all brilliant though and they like to see the kids happy and playing when they are well enough. They see them often enough when they're not. I've nothing but admiration for the nurses that have looked after Adam these past 9 months. All of them - at the Marsden, at Epsom, and the community team too.
Before Adam could leave he had to have his bungs and dressing changed. This is a once-a-week task and he's had it done every single week, without fail, since his line was put in last July. As long as it's done his way, and to his satisfaction then everything is fine. But if a nurse steps out of line, and doesn't bring the zoffs (plaster removal wipes) or positions the line or dressing so it's uncomfortable there will be consequences. He's even been known to demand it be taken back off and redone. But it's understandable. You try sleeping with a plastic tube, bungs and clamps digging into your ribs under your night clothes. And the skin around and under the dressing can become quite sore because it never gets any air to it.
Adam's had a good couple of days since he came out (sounds like prison!). Yesterday and today he went to the driving range and hit some balls. Adam's a speed golfer. He fires half a dozen balls (about half a dozen yards) in the time it takes anybody else on the range to get through their first practice swing. But I don't care. He enjoys it and it gets him out of the house where he would otherwise be stuck in front of the TV skipping between Nick Jr and Disney Channel.
Today cousins Ben and Lucy came to visit for the day, and that always brightens the spirits of all of our kids. After the golf I spotted Adam in the garden chipping a football over the badminton net. Which I was quite impressed with actually.
By the time it got to 8 o'clock Adam was clearly feeling the effects of his exertions. It's not often he decides himself that it's time to go upstairs to his bed, but today was such an occasion. Hopefully he will sleep well and be ready for more tomorrow, but the chemotherapy will start to take it's toll on him over the coming days. If he manages to stay out of hospital and infection free for the next 7 days we'll take that.
I'll be glad after tomorrow when Adam has stopped taking his strong anti-sickness steroids. They make him aggressive and at times very difficult to deal with. I'm not as good as Alison at backing-off and waiting for him to calm down. No, let me re-phrase that. I'm useless at backing-off and waiting for him to calm down.
We have dates for Adam's scans now. Slightly earlier than I had previously thought, starting with a heart echo on 20th April and continuing that week. He's not having a CT scan this time as it'd only be used in preparation for surgery at this stage. And it's very unlikely that Adam will have a clear MIBG scan and therefore be able to progress to surgery. The best we can hope for is continued response and a clear bone marrow. This will enable us to try for a stem-cell harvest and then start a new combination of chemotherapy drugs to carry on trying to clear the metastatic disease. It's not too much to hope for, is it?
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