Dear everyone,
Today was quiet and relaxing, thank goodness. We were all up early as the HAD people like to make an early start, particularly at the weekend, it seems. There appears to be a standard team who operate within the various vicinities and you can get any one, or two, of them at a particular time. They are all extremely nice and professional, so absolutely no complaints from us. I think their job must be a very difficult one.
Steven has been in good form today after a good night's sleep. Mostly, he has been pottering around getting his things organised. This takes a bit of doing with all of the crates of drugs he has in his room. We could establish our own pharmacy at this point! He also managed to set up the wireless connection for the apartment. This is always a priority with him as it is his main means of staying in touch with his far flung array of friends. One of the main things that bothers him in hospital is being without his laptop. Only Trèfle 3 offers wireless coverage in St. Louis.
So far, so good, with the temperature, currently hovering at around 37.5˚. Steven appears to be moving about quite well despite being confined for two weeks. Having the back pain under control helps tremendously in this respect. He went out for about a twenty minute walk this afternoon with Matthew and seemed to be fine afterwards. We have now also acquired an exercise bike which should be useful for rainy days when he cannot go outside. Those muscles will not escape regeneration!
This week has been a tough one for the French. Having been crippled by strike action for two days in protest at Sarkozy's proposed public service reforms, it was then announced that their premier was to be divorced from his wife Cécilia. She has since indicated that she couldn't countenance a life of duty and protocol in the spotlight, beside her power crazed husband. (Awfully unattractive package when it's framed like that, I'm sure you'll agree!) Many feel that she has been the 'control tower' behind Sarkozy's enormous success and are consequently very alarmed. I guess, this is a politician you either love or hate. There was a young choirboy-looking nurse (Julien) who was looking after Steven in pneumology, who felt it incumbent upon himself to educate the foreigners (namely us) about Sarkozy's evil master plan to decimate the French health service. Naturally, this young man proudly brandished an 'on strike' banner across his back during the strike action, even though he was working away as usual. The added thorn in this rather bad week was receiving another 'hammering' from the Argentinians in the rugby. The team seemed to have been afflicted by the same curse that hexed the Irish – an overly impassioned desire to win completely destroyed their organisation and shredded their game plan.
More rugby tonight. Good luck to na Sasanaigh!
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.
4 comments:
How lovely to read your report. Evelyn. Hope all continues positive. Sad for England but RSA played a good game. It wasn't the best of games considering it is a World Cup game but there it is!!!!! Nothing much to relate. It is mid-term in the schools so Julie and her son Christopher are in Buckinghamshire at a Motor Rally Academy for the week. Something Chris. is very interested in. Very expensive.....!!!!! He is a very sporty almost 15 year old. With you all in our thoughts and prayers Good night and God bless
from
Auntie Mae and family xxx xxx
Just a quick hello to you all in Paris. We had a chance to catch up on the blog tonight and we are really happy that the news continues to be positive and that Steven battles on with the strength of the South African pack!
All is well here, all our love.
Dear Evelyn, Matthew and Steven,
Hope that you do not have any more French transport strikes! We hope that your news continues to be good. Take care,
Cristina and Bert
No news is...... Hope you are enjoying your stay in the new home. That goes for all of you. I hope the strike is well and truly over. No great news from here. Working on the interior of house now and making good progress. I don't know where Joe gets all his energy from. Weather is on the dismal side. Temp warmed up this evening and then it started to rain- a soft drizzle. Christopher thoroughly enjoyed his weekend at the racing academy. It was only a half day really. It cost so much I was sure it was for a week. Silly me. Hope all is well over the weekend. Hope you and Matthew are able to relax and even get decent rest periods. You must be exhausted mentally and physically. God bless and love to you all
from
Auntie Mae and family xxx xxx
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