Dear everyone,
A beautiful day again in Paris – lots of blue sky and sunshine. Ideal walking weather. This evening Matthew and I strolled back from the hospital via the canal route. It really is quite pretty with lots of bars and restaurants lining both sides of the embankment. It just feels very civilised to join in the generally animated throng having an early Friday evening drink. We could do this, for a change, as Ellen was keeping Steven company in the hospital.
Steven was in sparkling good form today and much less tired than yesterday. He was told this morning that the last analysis showed that the infection in his central line seems to have disappeared. This is good news. Hopefully, it does not reappear at any future date.
The head nurse also called in to make an appointment with him for next week. This fellow is in charge of coordinating the induction of patients into Trèfle 3 and also the details surrounding their eventual dismissal from the unit. He is not the most cheerful man in the universe but we'll forgive him for that as this is further evidence that Steven's release is now almost fully assured.
Steve's blood counts today were: 3,900 for white cells; 3070 for neutrophils; 9.0 for haemoglobin; and 22,000 for platelets. No transfusions were planned.
The nurses are spending less and less time with Steven as the days go by, as he is increasingly handling his own medications and spending more and more time outdoors. My feeling is that this is in an effort to build his confidence and prepare him for the level of self-monitoring he will need to do after his 'liberation'.
We were all very sorry to hear of Auntie Margaret's passing away this morning. She was 81 and will be very sadly missed by all of her family. Our best wished to all of the Carrolls, as well as Tom, Michael and May.
That's about all the happenings from today.
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:
We are very pleased with the progress and hope Steve is going to be back to normal soon.
We were all tested for marrow transplant but all the tests were not suitable. It is great that there is an alternative treatment and that it seems to work.
Best wishes to Steve and all his family
Mae and Joe
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