Day +28 (1 March 2007)

Hello again,
Today has been much less busy than yesterday. We are facing a very difficult problem, Jesse is desperate to eat but the doctors won't allow him. They are very concerned about his diarrhea, a few days ago he managed to produce 1.4 litres, an enormous quantity when you consider he only weighs 16+kg and that would weigh 1.4kg! Then take into account that he hasn't had anything in his gut for a couple of weeks and you can begin to understand that this is his bowels secretions, not anything it is trying to digest. It has been getting better, it was 1.2 litres two days ago, 1 litre yesterday and a lot less today (I don't have a figure yet as it goes from 7am to 7am). But they doubled his dose of steroids nearly a week ago and they feel it should be responding more quickly.

So they are thinking about doing a biopsy of his bowel next week, this will mean a general anaesthetic and a laperoscopy (they put a camera down) as well as taking samples from different areas. If this confirms their diagnosis of GVHD and it looks severe they are talking about antibody treatment. It is a new therapy, only used since 2003. Everything I read online is probably out of date, but a lot of the poor bastards they treated don't make it, eventually succumbing to some infection or organ failure or other. I will find out more at the ward round tomorrow, I think I will ask to have a session with Paul Veys on a one to one basis. They all swoosh into the room on a ward round, five or six doctors fill the room and somehow all intelligent thought leaves me. I'm sure they don't mean it but it is very intimidating. I know they know what they are doing, they are so clever and very experienced, but it is very frightening and I just want Jesse to get better.

Of course Jesse doesn't understand this, all he know is that he is feeling loads better, he hasn't been sick for four days. He is stronger and starving! The first thing he thought about this morning was dough balls (from pizza express). He has a sniffer dog's nose and can smell the slightest whiff of food out in the corridor, so it is torture for him. We begged the really young SHO today for an inch of pitta bread, two hours later she returned with bad news. Nothing to eat until the diarrhea is less than 500ml a day. It is 11.30pm and I have just found out we are up to 600ml already with over 7 hours to go, so there'll be nothing for him tomorrow. All I can do is make a joke of it and face it head on, so today we spent many hours making an A-Z of food he would love to eat. He typed it all himself too, working out how to spell every word (except x and z by which time he was exhausted) It is an amazing achievement as anyone who has every tried to do any kind of reading and writing with him will testify to...here it is:
a=apples
b=buns
c=crumpets
d=danish pastry and dough balls
e=easter eggs
f=food
g=grapes
h=hula hoops
i=iced buns
j=jelly
k=kit kat
l=loganberry and lychees
m=mulberry and mango
n=nuts
o=olives
p=peach buns and pitta bread and pista rolls
q=quavers and quails eggs
r=raspberries
s=spaghetti and salt sandwiches and seaweed
t=thyme
u=unleavened bread
v=vol-au-vent
w=watermelon and wotsits
x=the ‘x’s from noughts and crosses crisps
y=yakult
z=‘z’ shaped toast

This evening I had a chance to show Jesse the blog, he enjoyed all your comments enormously. He laughed at the thought of Cory being Peter Perfect and would love to see a photo of Niamh. He couldn't remember the fox, but I could. He loved Joolz's Mexican fireman joke (I didn't think he'd get it but he roared), and enjoyed remembering his bucket on a rope, thank you Katie. All these little things do help. They help him keep in touch with who he is and that is so important! Thank you all and take care,
lol
C
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