The diary hasn't been kept uptodate for several months now, mainly as there were no significant changes with my situation, but also as I didn't spend enough time updating the pages. From May to November we were still searching for suitable donors. One thing that I learned in the hunt for donors was more about the degree of compatibility of their blood.

The preferred option when searching for a donor is to have an exact match at the molecular level. An exact match using these advance techniques can mean the donor is potentially as good as a related match. A related match is better for the bone marrow transplant (BMT) as there is less risk of graft vs host disease (GVHD). However it is still possible to have a suitable donor with slight mismatches at the molecular level, although the risk of GVHD does increase. Five years ago, the molecular matching techniques weren't available and after the initial match, the blood compatibility was determined using the CTLP tests, were the donor and recipient's blood are mixed together and the level of reaction noted. My blood matched the donors' on the more basic typing techniques but mismatched on the detail ones. Therefore the next step would be to carry out the CTLP tests to determine which of the 'mismatched' donors were the most suitable.

However there was one problem. In August we found out that I had been mistyped by the hospital after typing tests from the Anthony Nolan register contradicted the hospitals tests. This was later verified and meant that the hospital thought I had a certain tissue type whereas indeed I had a slightly different typing. Whilst this was a set back, it was not a bad as we had thought because the mismatch was at the more detailed level, and as mentioned before I was already mismatched on some parts of the detailed level. This meant that I was still a mismatch at the molecular level just as before, but on the more general typing I was still the same. It's a bit like finding that your spare tyre is a bit bigger that your other ones, but it still fits on the wheel.

So although the donors weren't perfect matches they were still suitable candidates. The molecular typing tests are supposed to determine the low level compatibility of the tissue type to try to reduce the risks of GVHD and increase the chances of success, but it is still not 100% correct in predicting the outcome of the BMT. Therefore with a slightly mismatched donor I could still have a fairly trouble free BMT, whereas sometimes even with a perfectly matched donor you could have lots of problems. It really is a risk assessment where the added risk of GVHD is outweighed by the chance of successful outcome, and therefore a risk I am prepared to take. Once a donor has been found I believe you should stop focusing on the numbers and simply prepare yourself for battle. You could have a 1% chance of something going wrong and it could still happen, so there is little point in worrying or hoping. You just need to adjust mentally and feel your inner strength as well as that of others. It may sound a bit like a spiritual mantra but there is alot that conventional medicine doesn't yet know about how your mind can influence the healing of the body, and I'm sure that the patient can have some influence on their outcome. It's just a matter of doing all you possibly can.

We also discussed a cutoff date for alternative action incase no donor was found. Previously I had mentioned that the closer to diagnosis the BMT is performed the higher the chances of recovery. It was nearly one year-and-a-half since my diagnosis and we were getting to the point of choosing an alternative course of action if no suitable donor could be found. From the outset I have favoured a BMT therefore I didn't relish the prospects of not having a donor, and using other treatments that do not offer a cure. We decided on Jan/Feb 2002 as the deadline, after which I'd have to try something else. This meant that my only chance of a donor would be among the ones that the molecular typing had shown as being slightly mismatched.