Saturday, December 30, 2006

Bizarre Love Triangle

A day for me and the boy Ctel. Good day but melancholy ending. Can never completely dispell fear of the future.

Thwe wife went to see her parents. Was a last minute thing the previous day. Auntie m had been visiting and since she was going back that way I said why didn't the wife go with her. So she did. Putting the boy to bed solo is always tricky. Such a rare occurrance.But he was happy enough to splash me from the bath. Primly refused to get out of the bath until I gave him time to clean his teeth. With the nurse's help his trachy tapes were changed and he went to bed ok.

He had a good night - for a change. Not too much calling for Mummy or auntie in the morning. Played fine until Granny came in the afternoon. Nice bit of 'normal' time with him. We all went to doctors to collect a prescription but he was very unwilling to do any walking outdoors but happy to race around in the surgery. Very happy when auntie came round. And happy to the point of being hyper when Mummy came home.

Read my emails last night. Brought me back to earth with a bump. Some froma US epenymoma parents group. One about a girl who had died just after Christmas - "now cancer free" her mother wrote. Made my stomach lurch. Another about a boy who's tumours have grown 30% in three weeks (three weeks!). And finally a dx (shorthand for diagnosis) on another email where a child had their tumour completely resected and chemoed only for it to come back on two occasions. Here we are hoping without saying that the boy's next scan will show he is tumour free. Marvellous though that would be, it won't be the end of our worry or possibly his fight. Makes it hard to look positively into next year.


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