T+62: Shortcomings of being demanding parents

We had a very interesting discussion with the department's psychologist today about the situation in which we now find ourselves. She pointed out something to us that really hadn't struck me before and that puts our current situation into a better context. As regular readers of this blog may have noticed, Marion and I have in the course of Kay's treatment developed a need to be on top of what is happening and to understand the issues surrounding Kay's treatment.

Last week, as I have previously mentioned, we had a meeting with the oncologist in charge of bone marrow transplants and to discuss the various problems and issues that we were having with Kay's treatment. Partial or incomplete communication was identified as being a problem and we agreed that from then on the oncologist would ensure that we were fully informed. But, as the saying goes, "Be careful what you wish for, as you just may get it".

The psychologist pointed out to us that the oncologist is now bound to keep us fully informed. This means that when there is a potential differential diagnosis, as in the current situation, the doctors are required to spell out to us all possibilities. The fact that this list contains scary alternatives is something that we have to learn to deal with, not least because it's knowledge that we have insisted on having.

Strangely enough, although it doesn't materially make any difference to the current situation, this realisation has made me feel slightly more reasssured. After a lot of thinking about the problem I had already decided that I was not going to spend any more mental energy thinking about the worst outcome. I have the strangest feeling that Kay's bone marrow is 'simply' being repressed by her medication and, while this is not a simple problem, I have the feeling that it's the problem that we face and one that can ultimately be solved. I have this feeling for a number of reasons, both quantitative and qualitative. Firstly, the timing seems to fit. Secondly, Kay is getting better day by day. Thirdly, it's the only explanation that makes any kind of sense. Of course, this attitude leaves me wide open to being blindsided further down the road with all the consequences that brings, but on the other hand I refuse to wind myself up about something that gut feel tells me is simply not going to happen.

Yesterday, when the oncologist started to tell us about the list of alternatives to which the differential pointed I wanted to ask her to shut up. But of course, this is exactly what we had demanded from her last week and on balance I'd rather she informed us and that we have to deal with the relatively short term uncertainty that that brings than live in the permanent uncertainty that comes with blissful ignorance. In this case ignorance is not bliss, it's the equivalent of permanent fear and uncertainty. It turns one into a victim of circumstance. We have learnt that knowing more gives one a certain (illusion of) control over events, or at least the ability to act as the patient's advocate.

I am yet again thankful for the professionalism of the individuals involved in Kay's care. I was explaining to one of the staff today that although I have my criticisms of what happens here, there is not a single member of the staff in whom I have less than complete confidence. I think it is just such a shame that the whole is so much less that the sum of the individuals that contribute to it. But that's another story.

Kay started off the day a little down-in-the-dumps, to my mind. I think that she's disappointed that she will not be able to be at home for Natasha's birthday and also that she's facing a prolonged stay in hospital. But this afternoon she brightened up considerably. She was asleep when the physiotherapist came by and was disappointed to have missed her. So I said that I'd play with her the various throw & catch games that the physio had left behind. The intention was that Kay would play these games from out of her bed, but after a while she decided that she wanted play standing up. And so she did. She spent about 10 minutes on her feet playing throw & catch with me. I have to say that it cheered me up no end to see her active on her feet again. The department's teacher then turned up and Kay had her first school lesson for a few weeks, the first time that she has felt like doing so. This was supposed to be followed by a shower, but she's now pretty tired and is snoozing in bed again.

And so we have more or less passed another day, (partially) processed another shock and (partially) adapted to another period of uncertainty. But I still want to fast forward through at least the next week.