Day +10

Photo of the Day

"Jesse my lovely, you won't believe what's happened, but Kipper, Kippeur and some of the puppies have been swinging through the air at the circus! I'm not sure how they got there, but do you remember how you let them hang on a rope out of your window one day? I think they must have been learning to do some great circus tricks. I think they must really enjoy being doggy super star acrobats. "

Love you and miss you loads, Lily xxx

Hi Guys...well, Jesse is lots better tonight. He made the turn early afternoon. I had two hours sleep (4am to 6am) last night and then a bit of a doze from 7.30 am. Jesse had a raging temperature all night and well into the morning. He needed oxygen till lunchtime. He vomited again in the early hours (another sheet change) and was delirious. He told me he wanted to move back to London so he could have the lovely sweets he used to love that were red or white, tasted of sugar, were round, square or rectangular, crispy and not sucky and as flat as a pancake. I have to say I was stumped, I usually know what he is talking about but on this occasion I have no idea! It was all brought on by the orangey/red colour of the plastic bag we have to put soiled bedding into!

The on call doctor came at 6am and felt that it could be a fungal infection. The chest x-ray was apparently inconclusive. The doctor in the morning felt the same, but I, by this time, felt it was very likely that it was GVHD. I suggested this to him and having looked at Jesse's rash (which by this point had covered the sole of one of his feet), he agreed. They had thought it unlikely as it is very early for it to be happening, but this morning Jesse's neutrophils and lymphocytes showed a little rise (having been at 0 for 5 days). This all points to early engraftment. He checked with Persis (the consultant) and he agreed too. Just in case, they started him on another anti-fungal drug, ambizone, but they also began a course of steroids, methylprednisolone.

Within 2 hours of the steroids he was a different boy. He watched Looney Tunes DVDs all afternoon and his rash and temperature had subsided. Below is a load of stuff about GVHD, it is only for the most dedicated of you...basically GVHD is caused by the new marrow fighting the rest of the host's body and can be damped down with steroids. On one hand it is a good thing, it means the marrow is taking and engrafting. On the other hand if it gets out of control it can be very nasty and life threatening...

Yesterday I noticed a few stray hairs around Jesse's face and wondered if this was a sign that he was losing his hair. Sadly I was right, today his pillow case is covered. Luckily he doesn't care, I mentioned it to him and he put his hand to his head and plucked out a handful. He seemed totally unfazed! I have two worries, one is his rampant cradle cap that is invisible at the moment...I don't think that will look too apetising when it is in full view! And the second is that he is likely to lose his eyebrows and eyelashes, his are so glorious it seems very cruel. They will all grow back eventually but I imagine he will look very different soon!

Thank you for your comments and emails. A few questions...Serioussamp, who are you? Leo, when are Skippy and Snoopy getting married? Hello Granny, we loved to hear from you, will you write again soon?

And finally here is a beautiful sepia photo of Jesse in all his cricket gear taken by Dominic at Greatham. It must have been August 2005, only a few weeks before we knew how ill Jesse was. Thank you, Dominic!



GVHD-an introduction (click here to read it)

ONLY READ THIS IF YOU ARE VERY KEEN! IT IS VERY LONG AND QUITE TECHNICAL...Ed