Hello everyone,
Steven had his bronchial fibre-oscopy at around lunchtime today. Dr. Bergeron did it herself to make ultra sure that nothing was missed and to see for herself what was going on. She told Steven beforehand that she didn’t really expect to find too much amiss but felt they should go ahead with the procedure anyway if for no other reason than to rule out certain possibilities. Steven was not terribly impressed by this rationale as he really hates bronchoscopies and this is the fourth one he’s had since May. He explained afterwards that he has only now just about learned to stay relaxed and manage the spontaneous gagging induced as the tiny camera descends. Having sat outside and listened as this examination proceeds on many occasions, I can tell you it is noisy with lots of very loud directions from the medical personnel and lots of choking sounds from the patients. Very unpleasant! Smokers beware!
Preliminary results indicate that there is nothing visibly problematic in Steven’s lungs. In fact, Bergeron thought they were looking good and healing well after the last pneumonia bout. Results from the lab are still pending regarding any tissues biopsied during this procedure.
Although Steven is feeling fine at the moment and remains fever free, PCR tests (detecting bacterial and viral infections at a molecular level) from his blood still show an increasing number of infection markers in his bloodstream. Medically, these ‘markers’ are viewed as reliable precursors to an infection that is gathering momentum within the body.
Following this rather unproductive encounter with the lung scope, the medical team appears to be a bit bewildered as to what to do next. At about 4:30pm, Steven was rushed off for an impromptu ultrasound of his heart and heart area. I’m not sure what the thinking was behind this, but apparently this imagery also presented normal results.
It is probable that by tomorrow they will have pulled all these strands of information together and come up with a strategy. I am beginning to feel that this will largely involve more biding of time to see what unfolds. Hopefully this ‘biding’ can take place in a home environment.
I have told Steven that he is now truly an international man of mystery – a veritable human conundrum.
Outside of the daily hospital drama, things are fine otherwise. We have settled into our apartment which is located in the diplomatic quarter of Paris. Matthew knows this area quite well as he spends a fair bit of time on trips from Brussels to meetings at the OECD which has its headquarters here, as does the European Union delegation. We have definitely landed in the chic, well dressed and coiffed, and definitely well dined zone of Paris.
I felt genuinely sorry to see France lose in the rugby - although I wasn’t against England by any means, who deserved their win. It was sad to see Chabal ‘bathed in tears’ – the ferocious wild man of rugby obviously has a soft side. We follow all of the rugby on French TV and because there has been so much hype and coverage of the team since we arrived in Paris, the pizzazz really seems to have diminished now that the home team is out. Not quite the same atmosphere.
More news soon,
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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