Thank you for so many kind words and good wishes and especially all the prayers said on my account.
The ongoing roller coaster of having a bone marrow cancer continues. On August the 20th 2012 I was diagnosed for the first time with MDS (Myelodysplastic Syndrome) and my wife Lisa and I were told that I would require an immediate BMT (bone marrow transplant) and that I should prepare for that outcome and was referred to the only hospital that does BMT’s in Ireland. For three weeks I was in shock and suffered from some severe anxiety, until I finally got to see the doctor who was the gatekeeper for all BMT’s in Ireland. Bottom line my diagnosis was correct but my immediate prognosis was completely wrong, and although I had some minor issues over the years, I was able to live a pretty normal life up to summer of 2021. In 2021 my bloods started to deteriorate, especially my platelets and so in July 2021 Lisa and I visited Moores Cancer Center at UCSD to explore the possibility of having a bone marrow transplant. We met with an impressive young doctor who had done all his homework about my condition and came fully prepared to our meeting. The doctor told us that he believed that there was a very good chance that I had been misdiagnosed and that I did not have MDS, but there were a number of other possible reasons for my blood disorders. MDS is at times a notoriously difficult disease to diagnose so while the news we heard was surprising it was not totally out of the question. We left the meeting very uplifted and hopeful, and shortly afterwards undertook a number of tests for the next meeting in early September. However on my birthday August the 30th I got a call from the Moores doctor (never a good thing when you get a call from a doctor before a scheduled meeting) and I was informed that not only was my MDS original diagnosis correct but I had four mutant genes, some of which indicated a poorer prognosis. Over the next few months I had a number of strange illnesses and lost significant weight along with having very serious fatigue. Long story short I was told in early January that the timing and risk reward did not justify a BMT for me at that time. After another bone marrow biopsy and a couple weeks or so later, I was then told my disease had progressed to a rare leukemia called CMML, and that I would need a bone marrow transplant sooner rather than later. Over the last couple of weeks the tentative schedule was firmed up to be more of an actual schedule for the bone marrow transplant. While not looking forward to the actual transplant, I am and was, eager to get it behind me. But alas, last week my anonymous angel donor, the 24 year old lady from the UK tested positive for covid and so my transplant has been pushed out another three weeks with a start date of May 5th. I, of course, sincerely hope that she fully recovers and does not have a difficult case of covid. Needless to say I am overall very bummed by this unexpected turn of events, but I believe it is all in Gods hands and there is a good reason for it. Strange thing is that I feel the best I have felt for the last 6 months, no pain, great appetite, quite a bit of energy and not so much fatique, pretty close to normal in fact, very strange and also unexpected
Sorry this blog is so long, ill try to keep them a bit shorter in the future.