Dear everyone,
Well, the highest Steven's temperature reached today was 37.3˚. The other two readings were both 37˚. Good for him!
The pain was also slightly better today. I feel that the long rest he had yesterday may have helped a little. The physiotherapist also visited and these exercises are useful to loosen up any tight back muscles - nothing too strenuous, just some gentle stretching.
The blood draw from this morning showed that Steven is low again on platelets and needs another transfusion – they are currently only 9,000. Steven spoke directly to Dr. de Latour this evening who felt it was okay to wait until tomorrow's clinic appointment to receive his platelet top-up. As there is no bleeding, they are not overly concerned. As usual, Steven likes to give the hospital a wide berth as often as possible.
Tomorrow, we are off to the hôpital de jour. They will do a full blood analysis and a complete physical. I'm sure another x-ray or scan will also be in the offing.
We are now approaching the 100 day threshold. Although this benchmark is not written in stone as a release date back to Brussels, it is likely that pretty soon they will do a full battery of tests to evaluate where we are at this point post transplant.
That's about all for the moment. I should probably have more to report tomorrow following Steven's visit to hôpital de jour.
Love as ever,
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.
1 comment:
Very good news TG Good night and God bless you all
from
Auntie Mae and family xxx xxx
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