Day -2

Cory in his karate kit is the Photo of the Day! We think he looks fab and maybe when Jesse is better he'll come along to the lessons. I've warned him he'll have to do what the teacher tells him, something he's always found difficult! Thanks for the photo and for the great jokes Cory and Niamh!



Today Chloe came from Oxford and stayed with Bernie all afternoon. I think they both had a lovely time! Thank you so much, it was a real treat for Derek and I to be together with Jesse! It was so good to have him here as I was worried about the Melphalan, but it only took 5 minutes and Jesse crunched on a lemon and lime Calippo like trouper! Poor lamb, they told us they would be starting at 2pm so I got him started on his ice just before, then the nurse came and warned us they were runnig 15 minutes late. An hour later they turned up with the drugs, Jesse had been sucking away on and off all that time. By the time they were ready we had to get another Calippo out and he was freezing! I wrapped him up in a dressing gown and his blanket and he kept munching. I hope it will have helped reduce the side effects, maybe it will protect him from damage to his throat and gut too. The nausea is supposed to start in a couple of days but actually he was very sick four times this evening (he was amazing though; cheerful and resilient), then the mucositis (mouth ulcers etc) can develop a few days later, his hair will fall out in a week or so. I really hope he doesn't suffer too much, he has been so brilliant, it just seems very unfair. I can't beleive how quickly the days have gone. Tomorrow we are on Day -1, with his last nasty, some Ciclosporin, which is an immunosupressant...and then on Thursday he gets his new marrow. We have to accept that there is no way of knowing how he will be, but I am sure there will be some very difficult days to come.

I wish you could have seen him this afternoon throwing back his head and screaming with laughter at the comments (he loved your's John), jokes and the pictures Joanne emailed through (I'll get Jesse to choose his favourite as the Photo of the Day tomorrow so you can all get a taste!). I know there are lots of lovely people looking and not commenting for one reason or another, so hello to you too! But don't be shy, we'd love to hear from you.
love to you all
Claudia
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PS Things really have improved since you were in hospital Dymphna, you poor thing, it sounds really traumatic. Jesse was quite shocked when I read it to him! Here we are with and internet connection, flat screen TV (that doesn't work as it isn't tuned properly), telephone, another TV that does work, parent's bed, play specialists, psychologists and even a special BMT kitchen that cooks each child's meal individually! However there are aspects that leave a lot to be desired, some big and some small but all avoidable. For example, the sour women in the family services department who have been very unhelpful on several occasions (I may expand another day). The mould on sinks everywhere on a BMT ward is another. I think there is going to be an audit; the head of cleaning came round on Monday and I showed him the before and after photos of our bathroom. I pointed out that the sink where everyone washes their hands as they enter the ward was in a similar mould encrusted state. The next morning it had been cleaned and resealed! I think I had better stop rambling and go to bed.
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