Dear all,
It's been a beautiful day here in Paris, which was wonderful, given the amount of time now spent walking the environs of the hospital. I think nearly all of the inmates of Trèfle 3 were turfed outside today to take in the fresh air – there were certainly many of them about – easily identifiable not just on the basis of familiarity but because they all wear 'the uniform' of gown, mask, bootees etc. Undoubtedly, they are all in fit enough condition to cope with being 'à l'extèrieur' for the moment. This, I feel, is undoubtedly a tribute to the success level and fantastic work done in this unit, which is truly a very unique and inspirational environment.
Today saw the return of Prof. Sociè to his rounds, following his two week holiday – it doesn't seem to have been long enough really. He reiterated to Steven the objective of having him discharged by the beginning of next week. The emphasis, according to him, is one of balance and this is never easy in the case of Fanconi anaemia. In his words, "cyclosporine and Fanconi anaemia just don't mix", and this is one of the eternal difficulties of transplant for this patient group – ie. the inability to cope with the high levels of toxicity induced by transplant drugs. Nonetheless, he feels that Steven is doing very well and that his high blood pressure and sugar will be stabilised.
Steven is now completely off intravenous drugs. All of his meds are now oral and his central line has been bandaged over. This line will be maintained until the 100 day mark, when ideally it is then removed. In the meantime it will be used for blood transfusions and during day clinic visits for the delivery of particular drugs and treatments. It is great that he is no longer hooked up to any drips or machines as it allows much greater freedom of movement.
Tomorrow will see the arrival of Ellen in early afternoon. Naturally, Steven is delighted and Matthew and I will benefit from more great company for the remainder of the week, and hear all the latest news from Bruxelles.
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.
1 comment:
What a wonderful report. It must be like a dream to be able to enjoy the fresh air and the wonderful feeling one gets by just being "outside". It is a miracle to have so much happen so soon and long may it be so. You have made us so much part of Steven's experience Evelyn that we feel we are sharing some of your anxieties and of course the elations of each step forward. Thank you Matt for giving Mick my address. I received an email this afternoon. Miracles do happen!!! Julie and Christopher popped in this afternoon to say Cheerio before going to Scotland on Thursday. We are still trying to recover from our visit home. Didn't think one suffered jet lag coming from Dublin....!!!!!! Must be our age.
Enjoy Ellen's return. Hope she had a nice break. Must get to bed. Good night, God bless you all and
Love
from
Auntie Mae and family xxx xxx xxx
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