Wednesday, 30 March 2011

The Weekly Update ...

Wednesday again (or at least it was when I starting writing), and at the risk of becoming too predictable I figured it was time I posted another update. The short answer is that things seem to have improved since last week. How much of what was going on then was really real, and how much of it was psychological on our part? Who knows? Does it even matter? The only truth is that it always seems real, it grips you like it's real, it consumes you like its real.

Ironically the thing that put our worrying on hold was the bone marrow tests that Adam had last week. After the procedure Adam had his usual post-anaesthetic 'episode' and threatened all who came near him with extreme violence, whilst screaming at the top of his voice that he wanted to go back to sleep, and wanted some more sleepy medicine “NOW! I SAID GIVE ME SOME MORE SLEEPY MEDICINE NOW!" Pity those people sharing a bay with him. Pity Alison who had to smile sweetly through her 7-year-old son's 25 minutes of insanity. As we've both previously discovered to our cost there is absolutely no point in trying to intervene whilst it's all going off.

Alison was warned that Adam might be more sore than usual (!) as they'd had to do some digging around to find any viable bone marrow. A consequence of so much treatment in general, and the recent high-dose chemotherapy in particular. They couldn't even put the really small plasters on that Adam prefers (insists upon) because there was more blood than normal. Sure enough when he arrived home he was both much more sore, and much less mobile, than he had been when he'd left that morning. The first thing he insisted on though was replacing the hospital plasters with nice neat round ones from our medicine cupboard. His 'holes' were definitely over-sized this time round compared to previously, but despite that I was a big brave boy and helped him change the plasters. Never mind how Adam feels about having his holes, I can barely stand to look at them!

Anyway back to the main point of all this - after the bone marrow extraction Adam's movement for the next few days was more of a hunched over shuffle. There was no running, no jumping, no trying to play football ... and consequently no foot pain. And because Adam stopped complaining, we stopped asking. And because we stopped asking, we started to relax a little more. And because we started to relax a little more, we stopped looking for any tiny indication that something was not right. They say no pain, no gain; well in this instance Adam's pain was most definitely our gain. Sorry little fella. I mean middle-sized fella.

By Sunday Adam was getting back to something like his old self again; less conscious of his war wounds, back to playing football outside, bouncing on the rebounder, climbing on, and jumping off, the furniture. He's not back to where he was before high-dose, but sometimes I overlook just how tough that was on his body even though outwardly he tolerated it better than most.

He was given a platelet transfusion before the bone marrow procedure, predominantly to counter the risk of excessive bruising and bleeding in the event something went wrong and emergency action had to be taken. His post-transfusion count was the highest since high-dose, so even if he's still not making too many platelets himself he is at least managing to hold on better to those that are donated to him.

Fast forward to this week and Adam has been back at the Marsden; for a CT scan on Tuesday, and MIBG scan on Wednesday. Our appointment to discuss results with the doctors is next week. I'm not very hopeful that we will be any further forward than we were before Adam went through high-dose and transplant, but I am fearful things will be worse. Seldom hopeful, generally fearfully. It's a permanent state of being really, only more acute than ever at scan time.

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