Technical update

Joe has finished his first intensification phase of treatment. It was 6 weeks of different patterns of different drugs. Some old, some new. Some obviously horrible: the doxirubicin was livid orange, and can only go into a large vein like the vena cava or it causes too much damage. Yes, you're right that is the vein that goes straight into the heart and yes it can damage the heart. Some less obviously horrible: the vincristine is a regular, but the doses in intensification reduced his calves to twigs in a couple of weeks. Some just awkward: the cytarabine had to go in through his wiggly every day at the same time for two sets of 5 days.

But it hasn't really been that bad. He's had a spell in hospital, but he wasn't very poorly, and was only in for 48 hours. In truth, if you get a temperature when your white blood cells are low, you have to go in, and the minimum stay is 48 hours, to get samples tested for infection and to take in a good solid dose of antibiotics. So he got off as lightly as you can. And they didn't find any infection either, so it was a bit of a false alarm. You can't get off lighter than not actually having anything wrong.

He's neutrapenic now. Which means he's got very little in the way of resistance to infection. The cytarabine has been knocking out all his bloods: he had a red blood transfusion last week and almost all of what they gave him has already gone. So his marrow has had a really thorough clean out. He could pick up an infection and have to go back into hospital at any time. But he's happy enough. And as long as he's got the energy, we'll keep sending him to school. We have to keep his mind and soul healthy as well as his body. And his bloods will pick up again soon.

Because of his low red blood cell count, his energy is a bit low and he's snappy and grumpy and quite unruly at times. But at least he can be shown it, and you can get a smile out of him and weedle him out of it. That's not an option when he's on the dexamethazone: he has no sense of humour.

So it's silver linings, as ever.

And we're looking forward to a couple of months of an even keel, hopefully. Just low level treatment. Vincristine and dexamethazone, but in reduced doses; and some other stuff.

Scrawny little toad

There was a time when there was nothing I might like better than the idea of my little sister's take-away going cold before she could eat it.

There were times when I was tempted (and actually attempted) to strangle her.

I broke 2 toes trying to kick her once. Another time I climbed onto a chest of drawers to reach her on the top bunk, but fell off and was concussed.

I missed treats, was threatened with hideous punishments because of her. Sometimes this was because the scrawny little toad had done something unspeakable and wouldn't own up, like steal and eat all the chocolate footballs from a jar set aside for treats for Christmas of 1978. And sometimes because the scrawny little toad had wound me up until I couldn't contain my fury, and then she told on me.

Oh yes, the idea of the rest of the family tucking into a tasty take-away while she wasn't there would have filled me with glee.

But tonight I just feel guilty and grateful.

Thank you Theresa for becoming a nurse and a star. Thank you for doing Joe's cytarabine syringes for 10 nights these last two weeks. Thank you for looking after us and supporting us and loving our children. Thank you for coming round to do Joe's cytarabine tonight, even though your take-away was sitting on your kitchen table being devoured by the rest of your family. I hope they left you some and that it wasn't too cold.

It nearly makes up for the chocolate footballs. By the way, well done for finally owning up. In 1998.