Day -9

Once again thank you for all your comments and for your many emails too. Jesse loves it when I read them to him. We now have internet access, although Jesse hogs the computer all day playing unsuitable war games, so I hardly get a chance to use it! At least he is happy, so I don't care! The last 24 hours have had many ups and downs, throughout it Jesse has been a star.

We are pretty certain he has a slight infection in his PEG (his feeding tube), but it is difficult to say as they often get sore because they leak some gastric juices which can be irritating to the skin. It looks infected to me and to some doctors, so he has been on antibiotics since yesterday and it looks a bit better. His canula blocked at 3am, the nurses fiddled with it for an hour and then gave up. Jesse eventually woke up and was incredibly good humoured about it. He said he was glad it didn't work!

In the morning he slept late and walked down to theatre in his socks and gown. He climbed up to the bed on his own and held on the gas mask himself. He wasn't worried and didn't have a word of complaint. The nurses gaped in awe! The line went in fine and hasn't hurt him at all today, but he was very sleepy and then he had an allergic reaction to something. His face was swollen, he had blotchy hives and then he was sick. But after some piriton he perked up and played on the computer all afternoon. He managed to eat a bit of supper.

This evening his temperature as been creeping steadily up, peaking at 38.1. It is possible that they will delay starting chemo tomorrow if he doesn't get better. As I write he is having a transfusion, as the first lot chemo (Campath) can bring on a variety of extreme reactions, especially the first dose. It is given through the line for 8 hours and so they want the transfusion done before then. They will decide tomorrow what to do; it depends on how he is through the night. I am worried as I know our donor can't do after 31 January, but I don't want them to do it if it is putting him at risk...I will do a new post as soon as I know.

On the housing front, we have a room! I haven't seen it as I have been with Jesse (apart from a lovely hour with Bernie this afternoon). Derek says it is very small. but it has a nice kitchen and family room, so there is somewhere for Bernie to play. It is in Guilford Street (just around the corner); one of the Sick Children's Trust's houses. He has only met one person, and it turns out her son (7 months) has myelodysplasia too! He is on Robin ward and is due on Fox ward (where we are) for transplant very soon. I think we are the only 2 cases of MDS in GOS at the moment, so how strange is that? I haven't really talked to anyone much except the lady next door. Her son is 5 and they have been in for 8 weeks. He may go home next week, but he isn't eating and he needs to before they discharge him.

I must go now as Jesse is still awake, but quiet. I think it must be hard to sleep while having a tranfusion! I am going to give him a cuddle.

Claudia