Thursday, 3 May 2007

The School Song

Have lots to do at work. But have spent much of the last two days trying to sort out schooling for the boy. Perhaps it's all pointless anyway after the latest meeting with the consultants.

We have been trying to get the local Special Educational Needs Assessment Service to do what they're supposed to do - an assessment. Their current position is that they won't until he's in a school. They've offered the local special school but no mainstream school - we have to get a place in those ourselves. We've seen three local schools and think one is appropriate. But that school says that he doesn't meet the special needs criteria. So, I've spent some considerable time in the last two days writing a long letter setting out why he should go to a particular local school. The local school aren't exactly jumping over themselves to have him so I can't say I'm very hopeful about the outcome.

Also, saw the oncology consultant about the next steps for the boy. Not a helpful picture. Gamma knife readiotherapy is not recommended, as it will only treat the tumour not the tumour plus the area from which tumour was removed, so giving significant risk of recurrance. The hospital had asked for a second opinion from America but they haven't even got the papers yet (sent surface mail), let alone given an opinion. Chemo alternatives look experimental at best and as if they would hospitalise him for months on end or they are just drug trial treatments with no curative intent. In the meantime, the boy's off all treatment and we just wait until we get something back from America.

A difficult waiting game.

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