Dear everyone,
Ellen arrived last night without any delays from the extensive strike action, so that was a relief. It’s really good to see her again.
I think that Steven is more tired than ever today and looking really poorly. Matthew and I met with Dr. de Latour and Anna this afternoon. They outlined a prognosis which is not exactly encouraging: Steven continues to be in a really grave and very fragile condition. He is now having difficulty with kidney function and they are really concerned about this. It is considered that the lungs and liver, although still problematic, are more or less stable. What they hope to see over the coming weekend is less toxicity in the kidney (from all of the drugs) and a stomach which is functioning independently of the NG tube.
They will continue the treatment until Tuesday, which is the three week mark, and after that they will taper the steroids. If things have not improved by then they feel that Steven is probably too weak now to endure an alternative treatment which would introduce new levels of toxicity and side effects for all of his organs.
We need to wait and see over the next few days and continue to hope in Steven’s favour.
Love to all,
Evelyn, Matthew, Steven and Ellen
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:
Our Hope and Love are winging their way to you Steven. Please God the weekend will bring some change for the better.
Auntie Mae and family xxx xxx xxx
Post a Comment