Hello again,
The weekend is always quieter here in the hospital. There isn't the same amount of people traffic and there is usually just one doctor in the unit. This weekend Prof. Socié is on duty and he has been keeping an eye on Steven and actively managing his medications.
Steven has had a high temperature since last night. They are not especially concerned as this is quite normal for this stage in the process and they are doing everything conceivable to keep him comfortable and pain free. They leave nothing to chance and try to rule out any possibility of virus or infection. For example, Steven has already had cultures done for a spot on his back and tear drops to rule out any possibility of infection such as chicken pox or conjunctivitis – his eyes have been a bit red, but are ok today. Both of these are highly unlikely causes of the temperature hike; however, they like to be sure.
In all, Steven has been more alert today than yesterday but is still taking lots of naps. He is moving around a lot better and seems more energetic.
We would sincerely like to thank everyone for all the messages of support we have received on this website and via e mail and telephone. Steven, particularly, greatly appreciates all the encouragement. At the moment, his computer is his main lifeline to the outside via messenger, facebook etc. In this situation, away from home and all things familiar and comfortable, one could feel very desolate: it's very soothing to know that people are thinking of us and following Steven's progress.
Love to all,
Evelyn, Matthew and Steven
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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