This is going to have to be very brief again. I'm afraid we got very absorbed in the Carnoustie British Open on TV in Steven's room. As a result we are both quite late back from the hospital and still have to get our supper 'on the boil'. That was a great performance by Padraig Harrington (makes me want to brandish my golf clubs again!), but boy did he wring out our nerves on those 18th holes. Wonderful to see the Irish win as it seems to happen so rarely!
Steven is really doing well at the moment and is beginning to adopt the appearance of someone 'lounging around'. He is feeling much better since the withdrawal of the cyclosporine. His legs are now fine and he is putting in a fair bit of exertion on the exercise bike. He is considering going 'walkabout' in the corridors but wants to wait for the results of the chimera test to feel really confident about this. The hands are still very red. His appetite and eating are both very healthy. Matthew and I hope to see Dr. de Latour tomorrow to discuss the medication situation and just get a general update. We had no blood results today as whichever doctor was on duty didn't record them – Steven had never seen her before and didn't get the name. We wait and hope that tomorrow's results and feedback will all be positive.
We hope you all had a good weekend.
Love always,
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.
2 comments:
How nice to read of your relaxed day. Yes it was great to watch and the outcome was worth a loud cheer. Joe and I are away to Tullamore maybe later today or at the latest Tuesday. My sister, Margaret is in Tullamore hospital and is very weak and the Drs are not giving much hope. All the family are on their way home. It is a sad homecoming . I will be thinking of you all and praying the wonderful progress continues. God bless you all
Love and hugs
from
Auntie Mae and family xxx xxx
Can't believe we're into another Monday...it was Harry Potter for me at weekend, a nice bit of life diversion! Steve the bike image is fantastic - hard to believe the very near past involved an isolation tent! Wonderful
Love to all
Aideen
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