T+60: Ups and Downs, but the trend is Up

The last days have seen mixed developments in Kay's progress. The last two blood counts have shown a downwards trend in her white cell count. Also her red count count has dropped quite steeply.

The top blue line shows Kay's red cell count. The peaks are when she's been given a blood transfusion. The first two transfusions each lasted around 3 weeks before Kay needed tanking up again. The last transfusion lasted 12 days, with a sudden drop between Sunday & Monday. Her white cell count (green line) also fell dramatically at the same time. The positive thing is that her platelet count has slowly risen during this period, meaning that her new bone marrow is continuing to improve at platelet production. I think that this indicates that her new bone marrow is not failing, which might otherwise be indicated by the drop in white cell count. But that's supposition on my part.

We have asked what this all means to the professionals but as yet have not had a definitive answer. We were supposed to have our weekly meeting with the BMT specialist today but the meeting has been cancelled for unknown reasons. Still, no-one seems bothered by these results. I'm beginning to suspect that yesterday's result was an anomally, we'll have to see what tomorrow's results are like. Kay was given blood yesterday so the important figure tomorrow will be her white cell count. Let's hope that it's back to +/- 2.

On the other hand Kay is looking much better than last week. She still needs oxygen, but she's more mentally alert, more active and sleeping less. Her colour was pretty poor during the weekend, but yesterday's blood transfusion fixed that and today she has rosey cheeks. Her heart rate and breathing rate have also improved after the transfusion, so certainly some of her poor condition during the weekend was due to a touch of anemia. She is a bit stronger, is inclined to get out of bed to sit on the toilet chair and just walked the 3 metres to the shower. As I write this she's taking one of her periodic hour long showers. She just sits on the chair in the shower and lets the hot water run over her body for an hour or so.

The last CMV virus measure showed that the level of the virus in her blood remains stable, which is a good thing. The medics face an interesting dilemma with treating the CMV virus: one of the effects of the virus in high enough concentrations is that it supresses bone marrow activity and so prevents the body from developing the necessary response. The anti-viral, the mega-expensive drug I mentioned previously, also has the side effect of repressing bone marrow activity. So the challenge that the medics face is to find the right balance between these two effects. Therefore the anti-viral is not likely to be used in concentrations high enough to rid Kay of the virus completely since that would probably have an adverse effect on her bone marrow. So one can conclude that the anti-viral is being used to keep the virus at a non-dangerous level while waiting for Kay's body to produce the long awaited T-cells.

There also seems to have been an improvement in Kay's nausea. After the events of Friday evening and partial repeat on Sunday we asked if she could be put on a lower calorie liquid feed and it seems as if this has had a positive effect. Kay has not been sick since, touch wood. Also Kay is making a positive effort to drink and eat. Yesterday she eat about 5 mouthfuls of lasagne and she has been drinking small but symbolically significant amounts as well.

Kay's just come out of the shower after 75 mins and I noticed another improvement: her skin is no longer hypersensitive. I could dry her off without her yelling from pain. She also doesn't seem quite so sensitive to temperature, the last weeks she's shivered uncontrollably after stepping out of the shower. Now she's not that cold.

Although Kay remains dependent on oxygen, the amount that she needs is very small. I suspect that the staff are now looking for reasons to send Kay home and I think that they will experiment with reducing her oxygen so that she can be off it and at home as soon as possible. But we'll have to see. I still have no idea whether we will be here tomorrow or this time next week.