Day +19

We had a difficult day today, Jesse is very unwell. He has been on IV fluids for 24 hours so hasn't been interested in a drink at all, but at least it means he hasn't been sick either. But he is low on Albumen so he went really puffy, especially round the eyes (the body can't deal with fluids properly if the Albumen is low). They gave him an IV infusion of that today too and he looks a little better tonight. Jesse has been very floppy and in and out of sleep most of the day. He still has bad diarrhea and horrid tummy cramps, which they give him codeine for. He has had a low grade temperature all day too. His face is red and so are his palms, and rashes come and go.

All these are symptoms of GVHD. The vomiting is a sign of upper gut GVHD, the diarrhea a sign of lower gut GVHD. The consultant Paul Veys came round today and he is pretty convinced that's what it is. The trouble is it is very difficult to tell without doing a biopsy of his gut, which is quite a drastic step. They can up the steroids, which they may do tomorrow, but this will lower his immunity and so if it is a virus of some kind it will put him at serious risk. Unfortunately the symptoms of an infection and GVHD are very similar but the treatment is totally different! It is very worrying because if the GVHD gets out of hand it can be very serious and even fatal. Also Jesse has acute GVHD, which means it has occurred in the first three months after transplant, you can also get chronic GVHD which is different and happens three months after transplant. If you have had acute GVHD then there is 50% chance of getting chronic GVHD too. And that can go on for years. I had a bad afternoon as I felt very gloomy about it all. They sort of know what they are doing but a lot of the time it feels like it is guess work. Karen, our lovely nurse says his poo doesn't look like GVHD poo. She probably know what she is talking about. I hope it is a mild case, that doesn't take hold and spread to the liver because that's when it gets really nasty...

Our near neighbours on the ward are going home tomorrow. They will be on Day +28. Their little girl Emily has just had her second BMT, the one in June didn't work. She is only 20 months old. Last time they went home on Day +28 too! This time the marrow has fully engrafted, I hope all goes well for them as they have been through a lot. I'm sure we won't be going home in 9 days time! Another baby went home today, he is 10 months old but he has been in for 4 months! There is no way of telling how things will go and what problems you will encounter. It is sometimes very hard to stay positive.

Chloe came today, she has been such a star! Bernie adores her and it is so nice to know that they are having a great time. She's coming on Thursday and Saturday this week as she is on "holiday"! I can't tell you how grateful we are to her. Derek will be going back to Brighton this weekend, it is almost unbelievable that 5 weeks are nearly up already. I'm going to stop now, as Jesse is peacefully asleep so I am going to pop over to see Derek for an hour or so...

Just a last quick message to the many of you (I know you're out there, I keep hearing by phone, text, email or hearsay) who check the blog regularly but never leave a comment...HELLO! And Coral, thank you for your text, I'll let you know if there is anything you can do, lovely to hear from you. If anyone wants to send a card or a letter to Jesse in a sealed envelope (no postcards and no things though please as there isn't any space and some stuff isn't allowed) then our address is:
Jesse Richards
Room 1
Fox Ward
Great Ormond St Hospital
Great Ormond St
London
WC1N 3JH
and the phone number in the room is 020 7762 6249, if I can't take the call I'll tell you and ring you back if I can.
Take care you lovely people,
C
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