Dear everyone,
This is the briefest of updates as it is now very late at night.
Steven had his scan yesterday, Saturday. Based upon what they can see, they feel that there are further spots/lesions on his lungs which are new and which have not been observed previously. All of the antibiotics targeting the lung have now been removed as they want to see how things develop so they can be sure of what they are dealing with, and how to proceed accordingly. So far, Steven has been fever free and this continues to puzzle all.
We saw Dr. Nguyen at around four o’clock today. They now suspect a fungal infection in the lung. This opinion is based upon the latest scan results and the fact that he has fever spikes which are not continuous – this apparently can be somewhat indicative of fungal, or aspergillus, infections. They will do yet another bronchial fibre-oscopy tomorrow morning to investigate further and corroborate their suspicions.
None of this is good news. Lung difficulties are notoriously negative in post transplant recovery. Nonetheless, we hope for the best, and we continue to have great confidence in Steven’s resilience and the fact that he continues to mystify everyone at every turn throughout all of his medical history.
Steven is utterly ‘fed up’ with this situation and is just so anxious to get our of the hospital environment and continue on his road toward better health.
In this post transplant situation where it is difficult to have total trust in the medical profession, as so much is yet unknown, we have every confidence in Doctors Bergeron and Nguyen. They are both totally patient focused and are striving to solve this situation for Steven. We can only wait and see how things transpire.
More later,
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.
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