T+22: Still uncertain about going Home

I had a chat with a doctor yesterday evening about Kay's state. The last two evenings she's had what seems to be a very mild allergic reaction to something, possibly the cyclosporine anti-rejection drug. Yesterday the duty doctor wanted to see the reaction for himself, which is nothing more than some red patches on her knees (yesterday) and her shoulders, arms & lower leg (Friday). It's not entirely clear whether it is an allergic reaction because it seems to appear only in the evenings, not with the same meds in the morning, or even what's causing it.

During the chat with the doctor it became clear to me that they are wrestling with the correct dosage of cyclosporine for Kay. In theory they should be able to find a dosage that results in a more or less constant concentration of cyclosporine in the blood. However, with Kay everytime that they measure the concentration they find that it's too low so they keep increasing the dosage - it's now been increased four times and Marion & I suspect that this is what is causing Kay's nausea since the nausea started last Monday when the cyclosporine dose was increased.

The cyclosporine is currently administered intravenously. Before Kay can go home, she has to be switched on to oral cyclosporine. But they have to have stablized the concentration of intravenous cyclosporine before they can switch to the oral version. So the instability plus the mild allergic reaction is raising some questions about what's going on. I gather that from today Kay will ge her meds later, 8am & 8pm, so that she can be kept under closer observation.

Regarding the nausea, the doctor told me that he really doesn't think that it's linked to the cyclosporine. I showed him Kay's dance video from T+7 and asked him why, 7 days after the transplant, Kay was so well and active and now, 21 days after, she feels so bad. He said that it's all due to the time it takes for the effects of the chemo, the radiotherapy and the BMT itself to work their way through her body. Whilst a patient can recover from a heavy chemo within three weeks, the combination of all of the above puts a much bigger strain on the body that takes longer to reach its maximum effect and longer before recovery starts. So in other words, this is just more or less normal for the stage that Kay is at.

Exceptionally, yesterday I was talking to the father of another BMT patient on the ward who is more or less at the same stage as Kay and he was telling me the same thing, that his son feels very sick, etc. However this boy also has problems with infections in his mouth, etc, which is something that Kay has avoided (so far).

So I suppose that all our joy at seeing Kay dancing around was always going to be short lived and that her current state is still very good, everything considered.

Yesterday was otherwise pretty quiet. I did manage to get Kay to play a short game of Room Hockey, but within 5 mins she was tired out. Spent the evening having a "House Party", ie we watched five episodes of House back-to-back. That has to be enough for one evening.