Dear everyone,
Saturday night on Trèfle 3 is not the most dynamic. It’s so quiet, you could hear a pin drop.
Today was marginally better for Steven, even though he still feels very ill and has a lot of physical discomfort. At least he has had more wakeful and lucid periods and he has managed to eat a little for breakfast and again this evening for dinner. The temperature has reduced into the high 37s.
Sociè is on duty this weekend and saw Steven this morning. Frankly, he couldn’t throw an awful lot of light on the situation as there are still no conclusive results from the fibreoscopy.
Medication-wise, the antibiotics are being given around the clock and he had two transfusions of gamma globulin (sounds like something that might make a body glow in the dark!) this afternoon. A diuretic was also administered as Steven’s weight reached an almighty 80 kilos today: they believe the two kilos gained since yesterday is fluid, since his food intake has been practically nil.
These are all the developments in the last 24 hours.
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.
3 comments:
Thank God for any sign of improvement. Hope it will continue so. Our love to you all
Auntie Mae and family xxx xxx
Thinking of you all.
Thanks for the up-dates, Evelyn - appreciated by many, I'm sure. Hope you all get back to Brussels really soon.
Bon courage!
From Máire and Kevin in Brussels.
Dear Evelyn, Matthew and Steven,
Hope things keep improving. Ou thoughts are with you,
Cristina and Bert
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