T+89: Small Improvements

Tuesday was a hell of a day for Kay. The treatment for the BK virus started, which involves hyperhydration. The result was that for the greater part of the day she needed to pee every 20 mins or so and peeing causes her great pain. It was very tough, also for me since I was walking backwards & forwards with bedpans the whole day, etc. Everytime I settled into doing something, like trying to read, I'd have to get up again to help Kay. Kay is also very tired because her sleep is constantly being broken up by the need to pee. We have resorted to putting a nappy on her at night so that she doesn't need to get out of bed quite so often. But this still needs to be changed every hour or so.

At one point we tried to reduce her pain by giving her a paracetamol suppository, but this had her screaming her head off with pain to the extent that I felt right on the edge on panic. Eventually we sat her on a bedpan and she managed to excrete the suppository. But the experience left my nerves ringing and I demanded to talk to a doctor about what could cause Kay such pain. Essentially the doctor didn't know but promised to keep a close eye on things. The next paracetamol went in via the NG tube.

The good news on Tuesday was that the CMV virus load has dropped by a factor 10, from 10e4 to 10e3. I guess that this means that Friday's attack on the CMV using a targetted immunglobine worked. If it wasn't for the BK virus I think that we would be feeling extremely happy. But as it is, things remain complex and uncertain and Kay's still got a lot of pain. Still, with the change of medication as a result of the BK virus and the decrease in CMV load it's possible that we might start to see an improvement in Kay's blood counts. But the head oncologist is cautious on the subject, she thinks that the stem cell "top-up" transplant will be necessary before a significant improvement in Kay's counts can be expected.

It's getting easier to get enough calories into Kay. Ditto with medication. I discussed this with the specialist on Tuesday. Last week I had raised the idea that Kay was producing too little stomach acid (and that the anti-acid meds that she was getting every now and then were not helping) - thanks to my Dad for the idea - and as a result Kay was started on a drug that helps the stomach digest food. The specialist asked me whether there had been an improvement and I told her that I thought that the combination of a different liquid feed plus the stomach medication had had a big effect. We're now able to run the liquid feed at 125ml/hr, which is twice what we were able to achieve a couple of weeks ago. Yesterday we were only 100ml short of the 1.6 litre daily target and I expect that by pushing the feed a little harder we will be able to hit the target while still allowing Kay to have some rest periods during the day.

Kay got her school report yesterday and what an amazing school report it is. She got straight A's for most of her core subjects. In spite of not having attended school for a large part of the year and only being able to keep up with remote classes sporadically, she has managed to get top marks in arithmetic, reading and comprehension skills. An incredible result under the circumstances and a testament to the support that she has had from her teacher, Esther, and from the hospital's resident teacher. And also to Kay herself, who works quite hard practicing sums, reading and doing puzzles.

Today we have the second dose of the BK/CMV antiviral med. Kay is in poor shape with a lot of pain around her bladder. But there's been less blood in her urine since the first dose of this medication so we have to hope that her actue symptoms will quickly lessen. And oh yeh, I forgot to mention, she has a further two new viruses, one of which is a simple rhino (cold) virus and the other something similar. Neither is a big worry at the moment.

So we continue on. Tired, struggling but making slow progress.