Hello everyone,
It's been yet another long day at St. Louis, so we are fairly exhausted. Feargal has just arrived up from Brussels, so I will keep this very short this evening.
When I arrived at the hospital this morning, Steven was sleeping – nothing unusual about that at the moment. He then woke up just as the nurse arrived. His mucousitis had really worsened overnight to the extent that he could not drink water, only take small sips. He said that the pain in his mouth and throat was really bad: a massive mouth ulcer had also appeared. To enable him to cope with all of this a morphine pump has now been added into the mix. This has the effect of decreasing the discomfort but it also makes the patient even more sleepy and a bit groggy. Anyway, Steven has been asleep most of the day. He did have soup at lunch and this evening, along with several yoghurts and bananas.
The combination of high temperature and morphine has made the oxygen levels in his blood drop, so this evening he has been put on oxygen.
Otherwise, Steven was in really good form (may be some morphine effect there) in between nap times, discussing the news, Wimbledon and so on. As I left he was on the computer and about to have a wash.
Evelyn, Matthew, Steven and Feargal
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:
Dear Evelyn, Matthew, Stephen and Feargal,
Thinking of you and wishing you strength and courage. The good days are coming closer.
Cristina and Bert
Wishing you all you need to keep going - I am amazed by the strength and positivity.
With much love as always
Aideen
Dear Evelyn, Matthew, Stephen and Feargal,
I have just finished reading your internet site and don't know what to say...
I am living in Paris and would love to be able to do anything at all I can to help. I don't know if Steven is up to visitors (especially ones he hasn't seen in 15 years!) but please let me know if so or if I can do anything at all. (even if anyone needs a couple of good books!)Tel : 0622967640.
Let me know!
xxxx
Rachael Mulligan
Ex Kindergarden classmate from Brussels.
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