Dear everyone,
Steven has been very tired all day today, mostly sleeping, with oxygen and the NG tube still actively in place. He is back to having platelet transfusions twice daily which is a relief as this has the best positive effect on the gastrointestinal bleeding.
The ‘pain team’ arrived this afternoon to review some of his pain relief history and decide what is the best way forward, given Socié’s recommendation to reduce the morphine. They are doing a 24 hour trial run of ketamine and oxynorm which are both very strong painkillers but which may suit Steven’s needs more appropriately for the moment.
The physiotherapist was also in for a second day in a row to try to clear the lungs of any fluid build up. They really do this quite effectively through a series of very specific exercises.
In general, today has been rather quiet with no real developments to report. Ellen is arriving this evening, flying in from Liverpool, so we are looking forward to her company over the coming days.
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:
Thanks again Evelyn for your informative updates. The news is encouraging in so far as platelets bd, the pain team reviewing strategies, the trial of new painkillers and the attention of the physiotherapist. A big welcome to Ellen also and I'm sure she will help you all by her presence. I have a very special message from Uncle Michael (Bro. Michael) He downloads or copies your report every evening and next day he reads it out to the Brothers at prayer time. The Community are praying daily for you all. He has not managed to send you a comment and is anxious that you are aware he is thinking and praying for Steven and you all.
Try and relax a little with Ellen. You must be exhausted physically and mentally.
Joe is excitedly waiting for his new IPHONE to be delivered tomorrow. It will allow us to continue to be in touch during our visit to Paphos as well as with family here. We are away from Dec 5th until 16th Jan.
Good night and God bless.
As ever our love to you all
from
Auntie Mae and family xxx xxx xxx
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