Day +36

Sorry yesterdays blog was so rubbish. I had had a long day and was exhausted physically and emotionally. Yesterday Jesse was full of beans: he had his one hour lesson, we had six trips to the lifts or shop and did three 100 piece jigsaw puzzles, and he still wasn't tired when it came to bedtime! He stuck to virtually total gut rest (he had 90ml water only), although he found it torture. In the evening Tim came and we had a lovely supper and long chat. We were preparing for a diagnosis of steroid resistant GVHD of the lower gut and trying to assess the pros and cons of the antibody treatment they were suggesting. Neither of us felt too positive.

This morning Jesse woke at 6.30, adamant that it was 7.30. He kept telling me to wake up, I had to when he insisted he needed a wee. I managed to stretch a lie in till 7.30, but from then he was on the go till 9pm this evening. Today he had a lesson, we had seven trips to the lift or shop, played three games of junior scrabble (2:1 to Jesse), had a lovely long visit from Venetia and John, food searched on the computer, watched telly and got well stuck into a 1000 piece jigsaw! He is like a human dynamo!

I was very sceptical that the biopsy results would be in any way helpful, but when it came to ward round the consultant announced that the results had been very interesting and helpful. Firsts results reveal that Jesse has adenovirus present in his gut. It is likely that this has been causing his recent diarrhea. The doctors were shocked, so was I. Of course the steroids have damped down his immune response so they have made it worse. He probably did have GVHD of the gut but it looks like it was treated by the steroids and then replaced by the adenovirus (a common virus with over 50 varieties that cause colds and gastro bugs and lives in 95% of us all the time). It can be very serious, just search on "adenovirus bmt" though a worldwide google search and you'll get an idea. But for us it was good news. GVHD that doesn't respond to steroid treatment is very bad news (try searching for "steroid refractory GVHD" ). So the doctors have halved Jesse's steroid dose and have started him on a weekly anti adenovirus treatment. Already the diarrhea seems better but this evening some GVHD was evident on his ears and feet. My worst fear is that the GVHD comes back and we also have to deal with the adenovirus. Apparently eradicating adenovirus can take weeks and months and the best treatment is to allow Jesse's immune system to grow strong so it can deal with it. The good news is that if it improves so that he can take food and medicines orally then it can be treated out of hospital. Jesse has continued on our own program of nil by mouth but at least it will be a bit easier if he isn't driven by steroid induced hunger...Wish us luck, the longer we are here the more I realise how little they know and how much is guesswork and pot luck, not terribly confidence inspiring!

This evening Carolyn came for supper, it was so good to catch up after so long. Jesse slept all evening, a first for several days. I hope it means he is finally relaxing, not that he is brewing something. Love to you all and more tomorrow...
Claudia