An update with no real title

I'm sorry I haven't written for ages. It's hard to fit everything in. Going back to work really flattened me, but even during half term I couldn't find the time. These things build up, and the more they build up, the more you put them off, and the more you put them off, the more they build up, and so on. It's like emptying the compost only not as smelly.

Joe has been quite poorly, quite well and also very well, and it's all very interesting, a bit sad and sometimes quite funny.

His boot things that he has to sleep in are really scratchy anyway, and then they have loads of velcro stuck on. He is not pleasant to share a bed with. They were newly and snugly fitted in January, and you can fit 5 fingers down between the sides and his leg. The muscle just vanished with the treatment.

His hair fell out again too.

But that meant he could have a tattoo on his head.

He's got his "Wiggly" or Hickmans Line in now, and it's pretty gross to look at without the dressing. It just emerges from his chest or from under the enormous white sticky plaster that covers the exit site. It's white and tubey. Largely, I suppose, because it's a white tube. And it has some clips on it to stop stuff coming out or in most of the time. And special bungs on the end to plug syringes into. I find it intriguing in a kind of rubber-necky, voyeury, bravado-showing, horror-movie, behind-the-sofa-Dr-Who-watching kind of way. That's to say I know it's gross, it freaks me out and I have to give him a long hug after I've changed the dressing, but I can't help but look and want to show I can do it without being scared, even though I am scared.

It goes up his chest below the skin, and into a vein in his neck, then down the vein. You can see the scar on his neck, and there's a white bit where you can just see the line rising like a white tendon and going into the vein. It's not visible anywhere else, only there.

During the treatment Joe's blood counts dropped and he got a brief temperature, which is enough to see you into hospital for 48 hours, plus the 4 it takes to lose and find your records before discharging you (well done NNUH: they did the same for Sue when she was in).

He was on the steroids and he went a bit food crazy again. Here he is making a shopping/meal list when he got home. It was pretty much the only time he stopped talking about food(well, ranting is a better verb, and many might say banging on, or obsessing, or moaning: I expect you get the picture - thank goodness he doesn't talk in his sleep - it might have been more than we could bear). See if you can read what he was into eating this time. His writing is getting very good.


He can have a bath and all that, but the line has to be covered up with sticky dressing. It's very peculiar putting on gloves to touch your child. Not, I accept, as peculiar as the white tube I'm trying to coil up and cover where it disappears into his chest.
It took a few days before half term, but once he had settled down from his hospital stay and finished his steroid course, he settled right down. In so far as a 5-year-old can settle right down...

From Photos of Joe

You should see him on his bike too. Standing up in the seat to pedal and sticking his little backside out so that he can go faster. It's doing his legs a power of good. And us too.