Room 4, Robin Ward, Level 5, GOSH. London

As Father Christmas was brief I will be too. Well we moved this afternoon to room 4 on Robin (Direct Tel 02077626262) the room is larger than William’s old room and we have decorated it to make as homely as possible. We now have our very own air lock, which takes 15 seconds to clean the air before you can go into the room so unless you are going to the kitchen or leaving the ward you don’t see anyone else. So I think Cath is going to miss the Blitz spirit she shared with those who we use to see in the corridor taking it in turns to sit on our one chair. This move does not have anything to do with William’s health it was purely so he is on the same ward as his doctors and to free up a BMT bed for someone else. At present William is getting no worst but also not getting any better. He has not eaten for over three weeks now; his gut cannot handle small amounts of liquid (100ml and we are changing his nappy with in half an hour). The test results came back negative last week for GVHD so the doctors are reducing the steroids and William will be off them by early next week this will allow his immune system to start to develop again and hopefully start to fight the virus which is stopping him from doing one of the basic survival functions i.e. eating. The draw back is by coming off the steroids the chances are increased that the immune system will start to attack William’s liver again (GVHD).
Never play poker with doctors because they must be trained at medical school how to hold a poker face and to keep their cards close to their chest and yours even closer. We know they can’t predicted the future but sometimes if you ask the right question while they are doing something else their guard slips and you learn something (as a rule not good news). This happen to me on Saturday as the doc was looking at Williams tummy I asked how long would it be before William could get rid of the virus his reply was well he needs his lymphocytes to tackle the virus ideally. It can take up to six months for the lymphocytes to appear hopefully they will turn up sooner than that.
To end on a positive note the move to Robin William took in his stride and was smiling when I left him and Cath, as one of his new nurses put his meds down his N G tube.