The weather has taken a turn for the ugly worst – belting rain with cool temperatures. I haven't looked at a European-wide forecast, but I suppose it's likely to be similar across northern Europe. What happened to the 'sizzling summer' we were all promised from the meteo service?
Steven was very tired today. His haemoglobin had dropped to 7.9 which could account for this. He received yet another transfusion this evening. Nobody seemed particularly concerned as they all feel things are pretty much on par. It might be interesting to see tomorrows count. Steven didn't get outside at all today due to bad weather in the afternoon and a lengthy transfusion schedule this evening; however, he did spend some quality time on his bike.
Dr de Latour and a Dr. Robin visited this morning. Dr. Robin is the head of the haematology day clinic, where Steven will be spending a lot of time henceforth. They both said that he will be released sometime on Wednesday.
Steven has had a nurse since Saturday who would pip all contenders at the post for the title of 'laziest human being in the northern hemisphere'. She is a very nice, pleasant soul really (we all have our compensations) but she is quite frustrating. Yannick seized his opportunity this evening to duck in to reassure Steven that he will be back on duty tomorrow. Saved! He is just too funny!
Love to all,
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.
3 comments:
Hi there
Well it’s been a long day here - off to an earlyish start to get to Tullamore in time for the funeral mass. Glad I went though as I have very happy memories of Auntie Margaret (my Godmother). Although it was a sad occasion, it was also in a way a very pleasant occasion, meeting cousins I hadn’t seen for a while and it was nice to put faces to names of younger relations who I only met for the first time today.
Not great weather here either – one minute fine, the next atrocious. Speaking of the weather, one of the weather presenters (Nuala Carey) who is currently in RTE’s ‘Charity You’re a Star’ has a sister who works with Marian and myself in the libraries. So anyway there might be some spare tickets for Marian and the children to join the studio audience this week. Nuala attempted to sing Britney Spears on Sunday and got rubbished by the panel but managed to make it through. So I’m sure her next song will be a spectacle as well! Anyway, hope the weather improves for yourselves in Paris.
All the best
Joe
Dear all,
We are sure that the weather swings are not helping things either (Brussels is no different from Paris in that respect!). We are still tinking about you all and are pleased to hear about Steven's very brave progress.
Take care.
Love and best wishes from the Sheffields.
Hi Guys, sorry it's has been a while since i have last been in touch i was workin for the past couple of weeks finished now though. Everything seems to be right on track recovery wise, steve it's just brilliant news that you will be dischargerd soon enough. Our thoughts are with you always x x x x Love Laura, Margaret, David, Laura Cody-Power, and baby Eve
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