Dear everyone,
Another beautiful, sunny day in Paris. Today saw the return of Ellen. It's always so reassuring to see a familiar face come through those automatic double swing doors into Trèfle 3. Ellen spent most of the day with Steven and I was glad that this time there was no plastic curtain impediment and they could at least walk around outside together. It's great for them to be able to get a lengthy enough respite from just sitting inside in the room.
Steven was in very good form today although he did begin the day in a bit of a frustrated mood. Earlier on, he had been informed that the bacterium in his central line is still present and that now they have identified this as the infection he had previously (ie. a staph negative infection). If you recall, this former infection eventually resulted in the surgical withdrawal of his central line, quickly followed by another surgical procedure to place a new catheter. Although this is not a serious infection per se, it is worrying that they consistently seem to be unsuccessful with antibiotic treatment, which they literally pour into the line. It would also be very bothersome to have to go for a third line placement. This evening Steven needed more platelets which they had to transfuse through his hand again – it all seems like a vicious circle and a little futile. Despite these happenings, Dr. de Latour feels it's all under control, but hasn't ruled out another surgical withdrawal. Again, we hope for a positive outcome.
Out next door neighbour was discharged today. I think the boy's name was Ahmed, but I'm not sure as it was always difficult to understand his father's voice which was very husky and whispery. I have never seen the dad so happy - he had a smile from ear to ear, just great to witness. I sincerely hope all goes well for that family as they have had a very rough experience by all accounts. It seems almost like the changing of the guard on Trèfle 3, many families are en route home (including us) while many more are arriving and about to begin this long process.
That's about all the news for the moment.
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:
Hi Steven
Well done for making so much progress so quickly. No real news here at the moment. I was amused by Cristina’s comment 2 days ago claiming to be the laziest human being in the Northern hemisphere – I’m ashamed to say that I might seriously match that description more closely! By the way Mae, sorry I didn’t catch up with you when you were over here – hope you’re over your jet lag by now! Anyway Steven, I hope your central line gets sorted soon and best of luck with your preparations for next week.
All the best
Joe
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