Hello everyone,
Nothing earth shattering to report today from what is a fairly mundane weekend at the hospital. The news is fairly brief this evening.
Sociè came around this morning for another brief chat and examination. He explained to Steven that they are still 'tailor making' his transplant to suit his needs. The discussion continues around the problem of reduced kidney function as a result of the cyclosporine. Cyclosporine is the most effective immunosuppressive drug available but Steven does not tolerate it well. Despite receiving it at a highly reduced level his response is disproportionately negative. Sociè is very reluctant to switch him to anything else, and states that we should not concern ourselves as they have it all under control. This is easier said than done. Trust is sometimes a very elusive entity but it is truly essential in these circumstances.
Steven's blood counts today were: 4,200 for white cells; 9.3 for haemoglobin; and he received a transfusion for platelets as they were low. For the moment the haemoglobin appears to be holding its own – hopefully this trend will continue. De Latour had originally said that this would take between 40-50 days to come into its own – seems like he was accurate once again.
Ellen returned to Brussels this afternoon and is now being missed by all of us. She plans to return later on in August.
The very hot weather continues. We hope most of you are enjoying this sunny spell. Until tomorrow then……
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.
No comments:
Post a Comment