Date

WBC : <enter>
Neut : <enter>
Hb : <enter>
Plts : <enter>

24 Months:   11th February
The last appointment was a bit of an anniversary. It was almost exactly two years since I'd been admitted on to Dacie ward in preparation for my bone marrow transplant. Whilst it was certainly a milestone, not all the news was worth celebrating as there have been more 'developments' with the recovery. I returned back to the UK after a great four week vacation in the UAE. The weather during Christmas is just like summer time in the UK, and it was a great opportunity to get a lot of kitesurfing in as I'd been neglecting it somewhat during the last year.

Prior to my vacation I'd had another PCR test as is standard, but I didn't want to know the results until I returned. My thinking was that if the counts fell then it was good news, and if they were to rise then I wouldn't want the news to spoil the holiday. My consultant, someone who I've grown to know and develop an understanding with over the last 18 months has always warned me that the achievement of a remission using the DLI method could take some time. The difference with a cancer like leukaemia to other more 'tangible' cancers like tumours, is that you may still harbour the disease but there are no outward signs of it. The saying out of sight, out of mind has a context here.

Although I've been well aware of my relapse, the DLI is a long term treatment which has extremely good results, so there has not been any rush to get more DLI injections. Instead we are following a plan of injections every six months, where every subsequent contains an ever larger quantity of the donor's lymphocytes.

Despite everything I've written, it still came as a shock to hear that my counts had more than doubled to a level of 44% (from 18% in November). I have always tended to place significance on the blood results, so those readings certainly caught my attention. I've been going to hospital by myself for some time now the appointment only requires a sample of blood to be taken and a chat with the consultant. However on this accession my consultant was off sick, and I was given the news by another more junior member of his team. She certainly had a look of concern with I quickly mirrored. The upshot of that appointment was that I'd need to speak with my consultant, but that there was a certain urgency to taken some action. This left me with plenty to think about for the rest of the day.

I felt a lot better a couple of days later when I eventually spoke with my consultant. He reassured me than even with this high PCR count there was no need to start worrying. In fact there was no need to bring forward the next planned DLI injection in April. The relapse at this point is no longer molecular, but almost certainly cellular. Meaning that it's a definitive relapse that could well be detected by less sensitive blood tests. Until now, the leukaemia was only detectable with very high level resolution tests, where as now we were getting to the stage where it was likely that the presence of the leukaemia and it's effects could start showing on the regular blood tests.

Perhaps that could explain the white cell count, which was the highest it's been since the transplant, and more like the level I was used to seeing before the bone marrow transplant 2 years ago. With this going on, I only realised the night before that my second anniversary of the transplant (February 1st 2002) was approaching. Although I didn't feel there was much to celebrate given the growing relapse I invited my father and brother for a celebratory lunch (my mother was still in the UAE). Relapse or not, it's still great to be alive, two years after receiving a stranger's bone marrow.

I was looking forward to the two year mark, as it meant that I'd be able to get in touch with my donor and thank her personally for giving me the opportunity of another chance of life. However, as I'm still receiving DLI injections of her white cells, I'm not allowed to get in touch with her. The two year time delay before contacting the donor, is effectively a two year gap starting after the last kind of any donation from the donor. As I've had more blood from her in the form of the DLI injections the two year gap starts from when I have my last injection. So it's going to be quite a long time before I get in touch with her. In the meantime I'll have to settle on writing anonymous cards.