A very quiet Saturday in all respects, but Steven did have a visit from Alex Vlaanderen this afternoon. Alex is a longstanding childhood friend who can boast that he's 50% Irish, with a mother from Waterford of all places - bound to be a great guy, really! That was very nice for Steven and really helped break the monotony of the weekend for him.
Overall, Steven was feeling better and in good form today. Partly this was owing to the fact that he had a good night's sleep. His legs felt better and he spent two sessions on the exercise bike (yes, Nicholas, you heard that correctly!). His chest is not too sore from yesterday's surgery. It would appear that the removal of the central line is less painful than its placement – which makes total sense. Sandrine informed us that the need for total sterility is now replaced by the need to be just very clean (ie. no need to sterilise food, clothing etc.). The white cell count today was a little down at 3,600. Sandrine ascribes this to the normal yo-yo effect of counts post transplant.
That's about all that's happening at the minute, so I will keep things short tonight.
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.
2 comments:
How wonderful to hear your latest news, Evelyn. Having your daily reports is such a help for a number of reasons. You explain things so well and help keep us rational about things. How nice for Steven to have a new face to talk to. At the moment there is a Fireworks display coming from the Chatham Docklands. It is a weekend regular during the Summer weeks. I can watch the display from our window. Continue with the great progress Steven. We are thinking of you and your family
God bless as usual. love and hugs from us all
Auntie mae xxx xxx xxx
Hi to all, the news just keeps getting better and better, long may it continue. Hey steven i've already put a dent in the peugot but nothing serious, a minor parking mishap :) All is quiet here in Waterford, it's great at the mo there is a bit of a baby boom amongst the power clan with two beautiful baby boys joining the family in recent weeks. No more news other than that, take care everybody. lots of love Laura de Paor x x x x
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