Pads was starting his mid-week weekend today with a visit to the church hall where mum was attending the ladies meeting. Waiting for him in the church office was Mr Higham who gave him an art lesson! First he drew an 'amazing' ship and then a person, then he marked the drawing Pads had done - one of his fat aliens....
At 2pm it was time for the clinic. The consultant and specialist nurse were there - we had nearly an hour talking with them. The Dr made a thorough examination and was very impressed with his responses. They exchanged knowing looks when mention was made of his foot pain. We were told that vincristine is the cause and that neither pain relief nor rest does any good. In fact, activity is the only way of shortening the duration. That was sobering enough for him, but then they moved on to his weight. He's pretty sensitive about the extra pounds he's put on. The cause of that was his pituitary gland getting irradiated. This has stunted his growth so he has not been using the calories for that. Plans were laid to meet up with the endocrinologist and also to remove his 'plumbing'. That looks like happening in early June. His scans are due 6-monthly, so the next one will be about that time too.
Perhaps the most awkward yet helpful discussion was about increasing his school days to 4 or even 5 per week. The staff were firm and gentle, the nurse reminded him of how he used to say to her how much he longed chemo to be all over. So the idea was planted and hopefully we'll see the fruit before too long.
After the clinic, it was time for 'flushing the port'. His chemo line is not being used and needs flushing through once a month. The nurse was really impressed at how good he was for this and offered him all sorts of gifts that were a little young for him. Inspired by the selection of 'happy meal' toys, he opted for a cheeseburger, and fairly demolished it.
We've started a new regime with the bottle/PEG feed tonight. He's having half a bottle in the evening. This is less calories, less fibre, and should free up his stomach for a decent breakfast.
Finally, if you have been checking for news a few times and there's not been anything to read, may I remind you again of the excellent www.changedetection.com website. You can set it up to email you when there's a significant change on this blog.