Dear all,
Today was another wonderfully hot and sunny day. Judging from the weather forecast, temperatures are expected to rise even higher tomorrow – it was around 30˚ today. We are lucky that we have a ground floor apartment with a sizeable terrasse, which is quite shaded from really strong sunshine. I wouldn't want to be residing on the 5th floor of a building in this heat!
Steve continues in good form. Socié was in to examine him this morning. He remains concerned about the effect the cyclosporine is having on his kidneys, but as of this moment hasn't offered an alternative antisuppressant medication, nor has he mentioned any other options. He has no worries re the insulin and blood sugar and feels the high blood pressure is now also sufficiently under control. It seems that Monday is a possible day for discharge, but it is more likely to be Tuesday. We'll see ………
The blood counts appeared rather crazy today. The duty nurse told us that they switch to an automated system over the weekend and that as a result the lab counts are completely unreliable – no reason to be concerned then ……. I guess.
We did a little shopping this afternoon as Matthew needed a few items. We went to the Galeries Lafayette which is a gigantic department store with a truly magnificent stained glass dome overhead – quite spectacular for this feature alone, if not for all the designer gear contained within. In all the times we have been in Paris, we have never visited this shop – we are not very enthusiastic shoppers, I'm afraid. Paris is definitely the place to shop and to eat, it would seem.
Love to all,
Evelyn, Matthew, Steven and Ellen
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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