Happy New Year

Kay is generally in good form. She has been well through the New Year and full of life. On New Year's eve we were invited round to friends and spent the last hour of the Old Year and the first few hours of the New Year with them, which was great. Kay got to bed around 2am, reluctantly. She had slept in the afternoon and again in the evening so possibly she was the least tired of any of us. However she insisted on sleeping with Marion and I, and how could we possibly refuse that? The result was that I didn't sleep so well, since the bed seemed rather crowded, at least on my side. Still, an enjoyable moment.

Since Kay is so "herself", so lively and busy, it's very easy to forget just how deeply 11 weeks of intense chemo has affected her body. For instance, she's quite weak - she couldn't open the top of a bottle at Old Year - she can't walk too far and riding a bicycle is completely out of the question. But she is very keen to exercise.

Some years ago my brother bought me a TACX Virtual Reality indoor cycle trainer. Yesterday I set this up using Marion's fitness bicycle and a old PC that I had lying around. Essentially the TACX software displays a VR terrain on the PC and controls the resistance felt by the bike rider through a brake attached to the rear wheel of the bike. It also takes input from the bike's steering. So effectively the cyclist can ride around a VR environment on a real bike.

Since I last used this system the software has advanced dramatically and the result is completely brilliant. And of course for Kay there's no risk of her falling off the bike and she can stop whenever she wants. I setup a short ride of 1.6km on the flat (around the "town centre") for her and set her off. But she only managed about 600m before she was too tired to continue. Nevermind, the system is there for her to use whenever she wants and it allows one's progress to be measured and goals to be set. So if she wants she can use it and see how she's improving, etc. I suspect that when she's home after the bone marrow transplant and stuck in the house for 4-6 months she will make quite some use of it. I've promised her that if she practices riding an MTB then when she's fit again I'll buy her a real one and she can go cycling with me, which is something that she's wanted to do for a while.

On Wednesday Kay's blood levels will be checked and if they are OK she will get the next chemo on Thursday, which will probably keep us in Nijmegen over the weekend. This is the last chemo of the planned induction/consolidation phases of the protocol. It is followed by another MRD measurement which will in part determine what happens in the coming weeks. To be specific, the MRD level is set at 10^-4 (ie, ten to the power of -4), which I understand means 1:10^4 cancer cells in the bone marrow or 1:10000. Kay's last MRD was 10^-2, in other words x100 higher than the MRD. In other words she missed the MRD by quite a bit but, we're told, not by a worrying amount.

If at the next MRD she's still above 10^-4 then she will get an extra chemo cycle. We have been told that this is pretty likely. The extra chemo involves agents that are normally used for the treatment of AML (Kay has ALL), but in this case will be used to try to push the ALL MRD under 10^-4. In the meantime the search for a bone marrow donor will continue. At the moment we have no further details: we do not know how long the extra chemo cycle will take or what it involves. We do not know when the bone marrow transplant could take place. This degree of uncertainty is very difficult for Marion & I as we have no idea what to expect beyond the end of this week.

One thing that I've been meaning to mention, though it's probably obvious, is that we haven't sent any Christmas cards this year. A bridge too far under the circumstances. So we hope that you all had a good Christmas and we wish you all the best for the New Year.