T+124: A lot and a little to say

I'll begin again with apologies for not updating the blog for the last days. There's a fair mix of things going on that mean that we're/I'm either flat out busy or flat out tired and there's not much left in between.

Medically Kay is doing well. Her white cell count droped slightly to 2.1 on Monday, but this is of no concern. In fact personally I'd be worried if it carried on sky rocketing because that could be seen as abnormal. Her red cell count was 4.8 but the rate of decrease was such that the doctors wanted to wait until tomorrow before giving Kay blood. The result is that at the moment she's extremely pale and tired, typical symptoms of anaemia. In the light of the dramatic improvement in her blood counts, the oncologists decided last Friday not to go ahead with the bone marrow boost. This is also a good thing, not least because the less treatment one needs, the better. The CMV virus load has been slowly increasing during the last weeks, it's risen from 10e3 to 10e4 in about four weeks. The medics are not too bothered by this at the moment, especially because of her blood counts.

Kay remained very sick during the weekend. Last week she had to have her feeding tube refitted 9 times, 8 times because of sickness and once because the tube split. However practice makes perfect and although she has continued to be sick she has refined her technique to such an extent that she's now able to keep the feeding tube down. (If you ever need advice on the subject, Kay can tell you exactly how it is done). As a result of this, we've had quite a few broken nights recently, which is hard in the circumstances.

The sickness decreased yesterday and (so far) today she's not been sick (spoken too soon, see below). I still think that it's a tummy virus as I have been feeling very bad for the last few days with something similar. I've had a sore throat for days and, in common with Kay, my stomach has been doing aerobatics in the afternoons and evenings for the last couple of days. Kay's getting better but I've just gone to bed because I feel pretty rough.

Even though she's at home, Kay is still pretty fed up with the whole situation. Being at home leads her to want to do things and the things that she wants to do most are of course the things that she is least able to do. We have tried to be relativistic with her along the lines of, "You're at home, you can sleep in your own bed, you have your family around you, friends can visit, etc". But all this is not enough. Kay is very mature in many things but in this respect she's just a frustrated 10 year old.

Tomorrow we have a very busy day, much like last Friday. Treatment will start at home at 8am with medication to protect her kidneys. Then I will drive her to Nijmegen. The BK virus treatment will start at 10am. In the afternoon she will be given the CMV virus treatment and then a special inhalation treatment to protect her lungs from fungal infections. Probably she will also require blood and platelets. I suspect that it will be 8 to 9pm before we're home again. Last Friday left me exhausted, so I suspect that tomorrow is going to be another marathon.

There's a lot more to tell about the last days but I think that I'd better get some rest before tomorrow.

Jeez, the carpet next to my bed stinks of vomit and everytime I get in or out of bed it releases a foul odor. It's been cleaned several times but the smell persists. Kay was just sick and I rushed to her bedroom to help her. Now the smell of vomit seems to be lodged in my nose, thanks to Kay and the carpet, and my stomach is doing competition aerobatics. Window open and time to try to sleep, I think. Distract myself from heavy thoughts by trying to work out how to replace the carpet in our bedroom without myself having to move all the furniture and the (new) bed out...