Dear all,
It's somewhat later than usual finally sitting down to write this evening, so again I will be brief.
Feargal departed and Aideen arrived as planned this evening. It's really great to have her company over this weekend. Aideen and I did the dinner run this evening which meant we were in the hospital roughly from 6 to 8:40pm. Like all other visitors, Aideen was surprised to see how well, lively, and very much himself, Steven actually is. We had planned to do the grand tour around the hospital and grounds (sightseeing of a very different kind for the visitor!) but in the end we didn't get to do this. As Steven's haemoglobin level was fairly low he was in the process of receiving two bags of blood, which couldn't be interrupted for strolling purposes. His blood pressure has also been quite high today, so the intravenous delivery of the blood had to be slowed down to avoid raising his pressure any further, and he had to be closely monitored during this procedure. Although he missed out on his evening run, he had spent a good deal of time outside with Feargal this afternoon and on the exercise bike, so all is well.
Today, Steven's blood count was 3,600 for white cells. His platelets are also quite low at the moment, so he will receive a platelet transfusion tomorrow.
Steven's medications are now taken almost 100% orally. They are trying hard to get his blood sugar and blood pressure stabilised and manageable in preparation for his exit from hospital. The feeling is that once these are under control, then it will be release time. Steven is already cruising the perimeter fence and the gates, preparing for his escape - really!
Have a lovely weekend, one and all,
Evelyn, Matthew, Steven and Aideen
Welcome
Welcome to this website which has been created to record Steven’s experiences throughout his stem cell transplant. Steven is happy that this information is shared with you all and that you also have the opportunity to share your thoughts and comments with us.
The Story So Far
In 2004, at the age of 21, Steven had just completed an honours degree in economics and politics. He decided to take a gap year to reflect on further study and future career options. In January '05 Steven went to have a general physical examination in a Bangkok hospital. Surprisingly, a routine blood test showed that he was extremely anaemic. A bone marrow aspiration indicated a diagnosis of bone marrow failure requiring Steven's immediate return to Europe to undergo further tests and treatment.
Back in Europe, a cytogenetic analysis soon revealed that Steven had Fanconi anaemia - one of the rarest congenital disorders which afflicts an estimated 3 per million of the general population. This is a genetically inherited disorder, acquired when a single recessive gene is passed onto a child from each parent. Normally Fanconi anemia sufferers are diagnosed at birth or during childhood as they exhibit an array of physical abnormalities and medical problems. Steven displayed none of these and actually had experienced a life of exceptional good health.
In the case of Fanconi anaemia, although a bone marrow transplant is the only effective cure for the bone marrow failure, it is generally poorly tolerated. As a result, a near perfect match between donor and recipient marrow is crucial. Feargal, Steven’s only brother, is only a 50% tissue match, and to date, no matched donor has been found on the extensive international bone marrow registries. Steven is to undergo transplantation at the Hôpital St. Louis in Paris, which is the most specialized centre for Fanconi anaemia in Europe. The stem cells he will receive in his transplant have been derived from cord blood collected at two separate births. Although they are experts in cord blood procedures in Paris, this is the first time they will perform a double cord blood transplant on an adult Fanconi anaemia patient.
Steven has been very defiant in the face of his diagnosis and has made very few compromises with his medical condition. He is determined to continue his life undaunted and plans to return to complete his MSc studies in International Development in Manchester following his transplant.
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