T+33 - T+39: Sick, Sick, Sick

Firstly my apologies for not having written in the last week. I've been in the UK for a few days and then away for a two day business meeting. All in all it has been a very busy week. Secondly I want to say that I'm totally in awe of Marion. She seems to be completely on top of Kay's situation and coping extremely well under very difficult circumstances. She has a positive attitude, she's calm and gentle with Kay and generally stable and just plain nice. Unlike me she's not flustered by Kay's sickness and not worried by her state. She doesn't seem as stressed as I feel, though perhaps she's just dealing with it better than I am. Whatever, she gets a 10/10 from me.

In general the doctors are very pleased with Kay's progress. Her blood levels continue to improve, slowly. I'll put the figures into a graph in the next days so that you can get an idea of her progress. She's not suffering from anything but continued nausea. Her medication seems to be working. She's now getting an anti-viral drug to combat the CMV virus in her blood, in addition to the cocktail of other stuff. An interesting point to note is the cost of the various medicines, which is generally printed on the prescription label on the box. The Kepra that she gets as protection against further epileptic attacks costs EUR 250,- per bottle. A bottle lasts a couple of months. The cyclosporine anti-rejection medication costs EUR 500,- per bottle. Each bottle lasts about 10 days. The winner of this little competition is the new anti-viral, which costs EUR 1150,- per bottle. Again, a bottle lasts around 10 days. In total I guess that Kay is getting around EUR 1500,- per week in medication. Some day in the far future I'd be interested to know what this whole process has cost.

So, medically things are going well. However on the care front, to my mind, things are not going so well.  Kay is still suffering from bouts of intense nausea. For instance, last Thursday she was sick four times, each time regurgitating the NG tube. Not a single day has passed without the NG tube having to be refitted. This seems to be taking a toll on her stomach, which has become painful and very sensitive. Kay herself is worn out by all the sickness. She is miserable, tired and has no energy. The footballing, hockey girl from two weeks ago is nowhere in sight. The nausea and pain are scaring her. They're scaring me for that matter, but Marion has discussed it all with the doctors and she says that it's all part and parcel of the bone marrow transplant experience. Intense nausea six to seven weeks after the treatment is 'normal'.

Funny, we have something of a role reversal here. In the past I've been the calm and unworried parent and Marion the worrier. At the moment it's the other way round. I suppose that this comes in part from the fact that I've been out of it for essentially 5 days. In this time the immediate experience has faded slightly and, stepping back into our little world, what I see is a very sick, miserable child who seems worse than when I went away. She looks like a stick figure from a Lowery painting. Also Marion has done all the hospital trips since we have been home and therefore I'm out of touch with the medical situation. Tomorrow it's my turn to take Kay to Nijmegen so I'll have the chance to catch up with the medical perspective.

But irrespective, the care side is hard. Kay is almost always nauseous during the late evening. So far this has meant that Marion - and me, when I've been home - has not been getting to sleep much before the early hours. I'm suffering from this rather badly, but for some amazing reason, Marion seems to be doing well on so few hours of rest. Equally, the cleaning consequential to all this sickness is no passing matter either. Bedding, duvets and clothes are regularly going through the wash. Mattresses have been turned and carpets cleaned. But even so, the carpet in our bedroom stinks of sick and Marion happily remarked that the one good thing about this was that it would give her an excuse to replace the carpets in the future. 

In theory we are entitled to support from social services. Marion has been looking into this and has got as far as being allocated a budget that she can spend putting together the sort of services that we need. This is a good system since it is flexible and ensure some sort of competition between the various agencies for the budget that we have been awarded. Marion is still looking into what is available and how the system works.

Even though (and perhaps, in spite of the fact that) I have been away for some days it seems to me that in some respects this is the hardest part of the BMT journey so far. We're largely on our own with a practically sick child, having to make judgement calls about whether she is fit enough to be at home and having to deal with all the care that comes from being at home. Although the benefits of being at home are indeed many and we wouldn't wish to be anywhere else, there's also a cost in terms of additional work and worry. Having said all this, I'm currently sat in the garden on a warm sunny day, Kay is lying on the sofa watching TV and all is quiet. So maybe the lesson is (again): live and enjoy your life from minute to minute. Actually there are generally far more minutes that are either neutral or enjoyable than minutes that are difficult and worrying. We just tend to weigh the worrying minutes more than then neutral/enjoyable ones, I suppose.