Dear everyone,
Feargal arrived this evening, safely, and without too much delay as a result of the strike action, so, thank goodness for that! It did take several hours of Matthew's time as he had to drive to the airport and back in the dense traffic, but it was better than we had anticipated. I will keep things brief.
It's been another long day at the hospital. They decided to clamp the nasogastric (NG) tube this morning to see how things would go. Not very well. Once this mechanism was no longer available, Steven's stomach began to fill up and he recommenced the original difficulty of congestion and indigestion – not very comfortable as you can imagine. By late afternoon, the NG tube was once again reattached and the stomach aspiration resumed.
I don't know where this leaves us to be honest. We will have to wait and see how tomorrow goes and what the plan will be. Steven received platelets this evening, as without them the blood reappears very swiftly. He really needs them everyday now, while he has the NG tube.
We did a very small walk in the corridor today, but it proved to be very taxing. Again, Steven was really exhausted for most of the day.
Love to all,
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.
1 comment:
A very warm welcome to you Feargal. I am sure your presence will mean a lot to Steven and of course to your parents. We hope your stay will be restful for you but most of all you will see first hand how Steven is doing. Sorry there is not any real improvement today but at least things are still HOPEful. Enjoy Feargal's company. God bless you all
Auntie Mae and family xxx xxx
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