News from fox

Wednesday +27
Happy 6th Birthday Hannah!!!
We have had a reasonable day today, got some straws!! W has a bit of a rash today, well he is a bit blotchy but not itchy or anything they think it may well be Graft versus Host. I am assured that a little is a good thing but not too much, I know of 5 children here because of it, 4 of whom have been readmitted (the other hasn’t made it home yet). We want just enough to make the system strong or something. Believe it or not it is quite hard to get hold of any/accurate information here. The nurses aren’t able to advise and the doctors are a bit vague and hedge their bets and then change their minds and the consultants tell you quite a lot in 2 minutes then I can’t remember exactly what they said!!! (note to self, maybe I should record him?!) One of the mums here is a nurse and has a comprehensive knowledge of the immune system but I feel hugely inadequate when talking to her and sure that she would be shocked by the naivety of some of my questions so I might have to do some (more) internet research!!!! Our last few consultant visits have taken place in the corridor because W has been asleep and the corridor is not exactly conducive to a full, frank and confidential discussion (but it saves them washing their hands for the 10th time and donning pinnies (and quite frankly sometimes there are up to 6 of them and that’s a lot of soap, hand towels and pinnies!)) Daniela stopped by the ward today (Wednesday is BMT/Immuno clinic up in Elephant Day Care) I popped out to see George and Ivanlyo in the family room. Ivanlyo looks great, he is charging around and has no NG tube. They have to come back every couple of weeks and they are going to start reducing some of his meds now. They have had a few problems but are SO positive and are very encouraging to talk to. They know a number of the current readmissions from their time here. William neutrophils and white cells have recovered a bit on their own which is good news and his haemoglobin is up a bit thanks to the blood from last night. Excitingly we received a get well card from the donor, which I was not expecting, addressed to ‘? And Family’. I have been studying his writing, sniffing the card (I am weird aren’t I? (rhetorical question)) in an attempt to reveal more about him than I know which is his sex (obviously) age and weight! He says that he hopes to hear that ? is feeling better soon, so we shall write again.

Thursday +28 (can’t quite believe it has been four weeks!)
W woke up this morning in a puddle of poo which wasn’t a great start for so many reasons but went back to sleep once cleaned up so he must have been really tired. He had a nice play this morning with the play assistant who loaned us a road mat so the cars have been ‘brooming’ around. I met Jo at Harrods and was treated to a fabulous lunch in their Lebanese restaurant, we had a short wander around but managed to hang on to our money (this time!) A hectic dash down to the tube when we realised that Jo was cutting a bit fine for her train back, and she was, it inconsiderately left without her but it did mean that we met up again for a drink. It was extra great to see her twice in one day!!! Williams blood counts were down again this morning so he had some GCSF this afternoon so that will help. The consultant will be round in the morning and I think they will be tweaking some of his drugs so I am writing a (short) list of questions (I have written them on hand towel, as the nurses do so that they don’t have to carry notebooks from room to room, clever huh!) and will be in the room (not the corridor) when they get here!
Friday Update,
the Consultant came by and did some nodding, so that's ok then. Late last night W was sick and brought up his NG tube so we had to have that replaced at midnight, which wasn't great at all. He is a bit tired today but sleeping now (I hope) and has had fun with Play Doh and the play assistant and occupational therapist (who cam routinely to check him out!) and will be watching more of Tractor Ted later, no doubt.