Back to school

Laptops are great. I am sitting in the STS garage, waiting for the exhaust to be changed on the Fiesta. Never a moment wasted.

Joe goes back to school tomorrow. We all do. He’s looking forward to it. But he’ll only do a couple of hours, maybe more if he wants to. I don’t know what it will be like. One of his friends didn’t recognise him the other day. His appearance has changed a lot: no hair, big round cheeks, big round tummy, serious face. It’s not a surprise, but we didn’t think of it. Should have kept his hair on until he’d done a day or two at school, no matter how thin it got. At least he would have looked a bit more like himself. Oh well.

Joe has had an overdose of adult company these last 5 weeks. We’re worried about how he interacts with other children. The steroids made him grumpy, and that is starting to wear off, so he’s got more willingness to chat. But he isn’t keen, and has needed adult help in playing with friends sometimes. Going back to school should help. But he can’t run around much: his energy levels are low, and his red blood is generally low, and his legs are weak still from the steroids.

You just have to keep telling yourself how ill the leukemia would have made him. But even so, I look at how weak and ill he is now, and it gets me down. It was only 5 weeks ago that he was running around. And on Friday he went to the physiotherapist; we thought it was to get some exercises to strengthen his legs, but it wasn’t. The chemo affects nerves that control the feet, and he has to wear special strap on boots in bed at night (they’re like ski boots made out of that stuff they make plaster casts for broken bones out of now). They stop the muscles at the back of the ankle from extending his foot. It’s called foot drop, or drop foot (one of them, or both, I dunno). It’s a precaution. However, he can't walk to the toilet in the night now. He has to be helped. So chamber-pot or shout for Daddy? I haven't persuaded him of the benefits of a chamber-pot, but I will!

He fell over outdoors the other day. He had his hand in his pocket, just like we were always told off for. And it’s true: you do bash your face (I never believed it when I was told). Luckily he just lightly grazed his cheek, and his platelets are high (in his blood) so there wasn’t any blood or big bruises. Spooked me though: I had to hold his hand on all steps the rest of the time. Turning into the fussy parent, a bit embarrassing, a bit intense, a bit stifling. The one I really didn’t want to be.

Bone marrow and lumbar puncture Tuesday in Cambridge. Very early start for Sue and Grandad. Hope they get a decent sample this time.