Wednesday, 11 May 2011

Surprise surprise ...

Surprise surprise. Nobody was willing to swap their own appointment for a noon slot, so we've ended up being stuck with it. The FDG PET scan is at noon on Monday; the Octreotide scan is on Wednesday and Thursday. I spoke with Professor Pearson the head of the children's unit today, who has effectively been consulting on Adam since we reached the end of the road in terms of UK treatment. He was both apologetic and annoyed that these scans have taken so long, but we are where we are and there's nothing to be gained now by me making any more of a fuss about it. I'll just keep this episode tucked away in my back pocket in case it can buy me some goodwill in the future. The Nuclear Medicine team have told us that the fasting period need only be 4 hours instead of 6. So at least we can attempt to wake Adam up early and force feed him his breakfast.

I'm almost certain now that we will also go ahead with the bone biopsy; the only question is whether or not any results obtained by the Royal Marsden would be acceptable as far as the U.S. trial is concerned. It may seem like a no-brainer, I mean it's not as though the Royal Marsden don't know what they're doing, but stranger things have happened. Rules are rules, and it's generally advisable to find out what those rules are upfront rather than have to go through something like this twice because of bureaucratic red-tape. Most likely it will be fine, but best to double-check.

Most other things with Adam remain as they were. No real changes in terms of his general wellness; his bloods are much the same, he's eating, drinking, sleeping, and playing. For the past two Tuesdays Adam's had a friend from school come round to play. This was Adam's best friend during his reception year. The two of them were practically inseparable in the playground during break-times; but Adam hasn't been to school, other than for the odd hour here and there, since July 2009. And yet they played like it was a matter of weeks since they'd been regular pals, not the best part of two years. Yu-Gi-Oh!, beyblades, playstation, football. At bedtime I told Adam it was too late to watch anything on television before he had to go to sleep. Whereas he would normally offer some protest - "I am!" or "Just something short, Dad?" this time he simply looked up at me and said softly "It's ok Dad, you can decide. I had such a hugely enjoyable time today with Georgio." And yes, those really were his words. Spending most of his time in the company of adults has had a profound affect on Adam's vocabulary; some of the phrases he uses are both funny and at the same ever so slightly sad too. But whilst it upsets us that so much of Adam's childhood is being taken from him, for the most part he just gets on with whatever there is for him to get on with.

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