Dear everyone,
Another very difficult day. Steven was feeling very poorly, tired and nauseous. The NG tube is still in place and all the difficulties continue as before. There is no end, it would seem to how much discomfort there can be and how little can be done about it. It is impossible to jolly Steven along as he is just not up to it. Feargal sat with Steven all afternoon but Steven drifted in and out of sleep most of this time and was really not capable of much interaction.
Marie Robin is on duty over the weekend. Matthew and I plan on talking to her tomorrow as we know her very well and she is certainly very experienced and proficient. We are constantly talking to everyone all of the time as things seem to change by the hour and there are always new questions to ask. Thank goodness, they are always so available and amenable!
That's about all I can say for tonight.
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.
3 comments:
Dear Evelyn, Matthew, Steven and Feargal,
We are sure that that very efficient team in hospital will do its utmost to help you all. You are in good hands.
Thinking of you,
Bert and Cristina
How dreadful for you all. You are very good to take the time to keep us aware of what the situation is. There is nothing I can say to comfort you. As usual Mass will be offered for Steven tomorrow. So many of our friends are joining us in prayers also. God bless and comfort you
Love to you all
from
Auntie Mae and family xxx xxx xx
I'm so sorry to hear that steven is in such discomfort...Please give him my regards and once again if I can do anything at all please don't hesitate to call.
Rachael Mulligan
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