Day -8 (part two)

What a day! I had a feeling it was all going too smoothly! Jesse started the Campath infusion at 2pm (he finished it about midnight). He was fine until just after 5, Derek visited him this afternoon and I took Bernie out and about for a bit (in fact I met up with Jackie, my accountant!). When I got back and D and I swapped he seemed fine (still playing his war game), but all of a sudden he looked rather woozy and went very floppy. Poor baby had a very high temperature and was feeling very rough. The doctors checked him out and said although it was early to react it was within the grounds of normal. They gave him piriton and calpol but he didnt perk up and his temperature was still going up, and he developed a rash. Then he was horribly sick and the oxygen saturation in his blood went low so they gave him an oxygen mask. It was all very frightening but after 3 hours he did feel a bit better and watched some TV. Red Ruth very kindly offered to come and play with Bernie this evening, so Derek and I had a couple of precious hours together with Jesse, which co-incided with him being not so ill...thank you so much!

This drug breaks down the T cells in the body (lymphocytes) and can often give a bad reaction. Today he has had steriods, calpol, piriton, pethedine, anti-emetic and three different antibiotics several times all in attempt to alleviate or prevent the side effects. He has another dose tomorrow and his first dose of fludarabine (another chemo drug with hardly any immediate side effects), but because he has had such a strong reaction today he will have to have all the above premeds again, which they were hoping to avoid.

Jesse hasn't complained (except once at his lowest moment he said his life wasn't cool) and has been very funny at times. He was having difficulty getting out of the high bed to go for a wee so he told the nurse that the bed should be redesigned with steps to go up and a system involving gravity and transformation to get down. She suggested he should draw a plan and then show it to the boss who may get new beds made to his specifications! We have been working on plans for nice things to do when he is better, although I'm a little worried it may well work out a bit on the expensive side! One of the first things we are planning is a trip to the Carribean, as he says the water is very shallow and he would love to go swimming in it. He would also love to go gathering berries, bay leaves and ants there (we were watching a telly programme tonight where two modern guys went hunting gathering in an olden days way). He wasn't too keen on the hunting bit though. And then we are going on a trip to China, to eat lots of seaweed! I think our list will be quite long and very costly by the end of this!

Thank you again for all the post and emails. He really loves them, I read them out as they come in and they are a great distraction and a lovely way to make him feel connected with the world. I haven't read him Maike's post as he was asleep, I wonder if he is meeting a little German girl in his dreams? I'll ask him tomorrow. I have counted up and we have heard from Austalia, Winnipeg, LA, Boston, Paris, Cannes, Berlin, Birminham, Cheltenham, Chelmsford, Brighton and London. Isn't technology a wonderful thing! And so are all of you,
love
C & D
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