Monday, 7 June 2010
Pass the sick bucket...
Adam is clearly not himself at the moment. Jessica woke up on Saturday morning being sick, and by late afternoon Adam had begun to do the same. Whilst Jessica is now back to her normal self, Adam is still lying around doing nothing, demanding the sick bucket from time-to-time (though he’s not used it), and refusing food. He’s eaten nothing but half a slice of toast today. I’m trying not to worry too much, to keep everything in perspective, but the longer things go on the more difficult it becomes. Fingers crossed that tomorrow he’ll be back to eating, drinking and playing normally.
I carried him upstairs to his bedroom last night - I can’t remember the last time I did that. I don’t get that many hugs these days so I took it slowly. It can’t be only my children, but most of their shows of affection as they get older are when they’re ill or upset (shows of affections when they WANT something don’t count). Adam does this thing where he says to me ‘close your eyes and pucker up’ and then as I go to kiss him he moves so I end up planting one on his nose or feet or under his arm. He thinks it’s hilarious. I do enjoy seeing him laughing and happy, but it still gets tedious when he wants to do the same thing over and over and over.
Adam missed his chemotherapy on Sunday because he refused to take the 6 capsules of oral temozolomide that he needs to swallow each day. He got himself so worked up that he was physically sick. It’s the only time he’s been sick since the early hours of Sunday morning so we are fairly certain it was self-induced rather than his stomach bug. Today we took him back to try again. It took the best part of one and a half hours to finally get all the capsules down him. He moaned. He shouted. He cried. He told us we weren’t the boss of him. He told us he was only having four. But eventually he had them all.
It wasn’t until Adam began feeling unwell that we gave any thought as to reason why Adam has to take six capsules every day. I suppose in many respects we have become just as accepting as Adam about things. The actual reason turns out to be because Adam’s weight means he requires a daily dosage of 90 mg. The capsules are available in 5, 20 and 100 mg. I can’t help thinking that there must be a way of making it easier for children to take the dosage they need. Like a custom 90 mg capsule. Even a 50 mg capsule would halve the number he had to take on a daily basis.
Tomorrow is the last day of this cycle before he is retested - CT, MIBG, and bone marrow. Provided his disease is still stable we should be able to continue on the same drug combination, although approval will again need to be given by our local NHS Trust. Nothing is ever straightforward.