Day -6

Thank you again for all your comments. I was busy all day with Jesse so I didn't even put the computer on, I'll read the latest comments to Jesse in the morning. After I finished yesterday's post Jesse was so peaceful I went round the corner to visit Derek. I had a tour of his "Home from home" (it is good to be able to picture where he and Bernie are living). We had a microwave meal together and shared a bottle of wine. It was really therapeutic to get out. I was back before midnight and Jesse had just woken. He was in a good mood, we looked at the blog together and I read him some comments. He liked your joke Cory (but I think we may have heard it before) and he was in stitches with your one Niamh! He liked the 2.30 joke too! Thank you all!

He had a quiet night, but in the morning the most exciting thing happened! His tooth came out...it is under his pillow as I write. Inspite of this he was in a bad mood. He wouldn't watch TV, he switched the computer of and turned his head to the wall. He wouldn't eat or drink. So I got into bed with him and we snuggled up while I read "Five on Kirrin Island Again". He cheered up no end, but was in a funny mood all day. I think he was feeling rough, he has a very runny tummy. But he enjoyed his lesson again and then ate a good lunch (for him). This afternoon Derek visited and they had great fun building a Knex car (still to be completed). But just after he went Jesse had another bad reaction to the Campath, very high temperature and shakes. They had to give him oxygen again. But after a couple of hours he was a bit better.

While this was going I had to go off and have the Green Precautions talk. This is all about what is and isn't allowed for when he hits "Green" on Monday. He will then be in strict isolation as he will have no natural immunity left. Don't worry, I won't go through it all. It took the nurse 1hr 10 mins to tell me. Sufice it to say there is a lot of hand washing, apron wearing, clothes washing etc to be done and much more. All his water has to boiled and drunk within 4 hours, food is to be eaten within one hour of cooking (by the special kitchen), teeth brushed 4 times a day with a disposable toothbrush etc, etc etc.

It was during this talk that I pointed out that our bathroom has sealant all around the bath that is black with mould. The senior sister was horrified and even more so when I showed it to her. She said that she would try to organise works to look at it on Monday. It struck me that Derek and I could do it more cleanly and quickly ourselves. So I suggested that as a plan and after a few negative thoughts about insurance and pipe damage she quickly agreed that if was miraculously sorted by Monday that would be the best for Jesse all round. So guess what, we're going to being doing some unexpected DIY tomorrow!

The wonderful Red Ruth is going to turn up with the sealant and the fungicide and then babysit Bernie while Derek and I tackle the job. We'll let you know how we get on. Tomorrow Jesse only has Fludarabine (the Campath is all done now) and then on Tuesday he has the real nasty; Melphalan. This will make his hair fall out and maybe give him a very sore mouth and gut, although apparently if he sucks on an ice lolly while it is being administered (it only takes 5 mins) then this side effect can be greatly reduced or even eradicated. So we have until Tuesday to decide which flavour of Calippo to order in! At least there are some ups to all this!
More tomorrow!
Love
C
x