Thursday, 14 April 2011

Written on location ...

Not much of substance to report this week really. We are away at the caravan at the moment getting some rest and relaxation (within the limits of what's possible with three children), and enjoying some family time together. Obviously I have taken a lot of time off work over the past year-and-a-half, but not much of it could be classed as 'holiday'.

I can't overstate how good having the caravan has been for us. It's such a lifeline to be able to get away from everything (but still be close enough to home to be within our comfort zone as far as Adam is concerned). The biggest benefit of all is we can live the same lifestyle, eat the same foods, do almost all the same things for Adam that we do at home. I just wish the kids would get with the program and stay in bed longer in the morning. Instead they fall naturally into the habit of going to bed later and yet waking up at the exact same time as usual. Bad, bad, bad.

Adam himself is doing great at the moment. I am aware that may seem at odds with recent posts, but apart from the first couple of months after diagnosis it's been like this throughout. If you lined up Adam's scans with a group of other NB children he might appear clinically to be in relatively bad shape. However, if you saw him, and observed his behaviour, you wouldn't suspect there was anything wrong with him. He's not quite back to how he was prior to high-dose, but he's not far off. Now the weather is improving, and the days are getting lighter, he's been spending more time playing outside with Jake and Jess. Consequently his general level of fitness, which took a big knock as he went through high-dose, has started to return. His energy levels and stamina are noticeably improved from what they were just a week or two ago.

On Tuesday we had a day at Chessington World of Adventures before travelling down here. We all had a great time, and Adam particularly enjoyed (1) me getting wet on bubble works after he'd assured me the water wasn't real, (2) me getting scared when he made the pink elephants go really high after he'd assured me we would stay low, and (3) me screaming with fear on the runaway train after he'd assured me that the second time round it only went 'really slowly'. You get the idea ... all in a paternal day's work.

Adam's blood counts have plateaued over the past fortnight. Hb is 10.3, neutrophils are 1.3 and platelets are holding around 80. Though not normal by any means the numbers are respectable considering how much treatment Adam's had, and we are now back to weekly bloods. I think in total Adam had 6 or 7 platelet transfusions since high-dose, which is a lot fewer than we would have forecast a few weeks ago.

We are still waiting for some more information from America before we can make a decision about where we go next. It's also been suggested that it might be useful for Adam to undergo some additional tests, although we don't know what, why or when yet! We're doing a good job of not fretting about how things are going to work out logistically over the next six to twelve months. It's going to be a pain in the proverbial for sure, but we'll muddle through and get it done. In the meantime we are just getting on with life one day at a time. Much like everybody else really.

No comments:

Post a comment