T+99: Not much change

Apologies for the silence, I've been between laptops for the last few days. My new Dell arrived yesterday so I've been working hard at getting it basically configured.

Kay's last few days have been mixed but fairly stable. Eariler in the week she developed an infection around the line in her chest which caused her a lot of (additional) pain. She has been given a broad spectrum antibiotic and it seems that the infection is clearing up. Certainly on Thursday she seemed to have less pain in her chest. I haven't yet spoken to Marion to hear how things are today. (I'm struggling getting used to the keyboard layout of this laptop, making lots of tryping mistakes). This infection is of concern because in principle it could stop her coming home for her birthday.

For the rest there's not too much changed. On Wednesday her white cell count rose slightly from 0.4 to 0.6, which is a good thing. However these are still small figures. The CMV virus load has remained the same this week. We had hoped that it would drop from last week's 10e3 into the "safe zone" of 10e2. But that's not happened yet. We're still hoping that it will drop further before the bone marrow boost transplant. The boost is scheduled to take place on the 13th August.

The BK virus symptoms remain largely the same, Kay is still urinating blood and on occasion has a lot of pain after urinating. Marion is of the impression that there is less blood in Kay's urine, but we'll have to see.

Kay in her self is extremely tired and very low. According to Marion she slept the whole day yesterday. On Thursday she was more active, to the extent that I shot this iPhone video http://www.youtube.com/watch?v=UuhKTnA3hLw of her singing with Lauren. She was cheerful and we played some games and danced for a few minutes to some 80's music (Brass in Pocket). But at the end of the afternoon she was absolutely exhausted and complaining that she had done too much. Everytime that she feels pain it all becomes too much much for her and she feels that it's very difficult to go on. The trick at the moment is to keep her spirits up, to bring in the outside world and to offer her something to look forward to.

She has had a lot of cards and presents from people. Also, her school has arranged a sort of "treasure box" of presents for her from the children. They have given her one present to be opened each day of the school holidays, each present from one of her classmates or friends at school. These things cheer her up enormously and give her something to look forward to each day. Also she feels less "forgotten" by her friends and classmates, which at this time of the year is an easy feeling to have, with everyone going on holiday and the school being closed.

The biggest thing on the horizon is the possibility that she will be allowed home tomorrow so that she can wake up in her own bed on her birthday. We have warned her to be cautious and not to get up her hopes since we'll only know that she can go home tomorrow. But as long as everything remains stable... 

The plan is that she will come home tomorrow and will return early Tuesday morning for the next BK virus treatment. The logistics around this are fairly complicated. She will have to have a platelet transfusion tomorrow to ensure that her platelet level remains high enough during the time that she's at home. Then there's her medicine regime, which is pretty extensive. Also she will probably need to have antibiotics via her line, which is beyond our skills. So I gather that Marion has arranged for nursing support at home. Marion is on top of all of the details involved, to be honest what's left of my mind has been tied up in the business this week.

We're doing our best not to look forward to her being at home, but still, it would be fantastic. Plus, Marion & I would get the chance to share our new bed together for the first time. What a strange idea!