Dear everyone,
Steven continues to be very weak and today was another difficult experience all round.
Matthew and I met with Prof. Socié on Friday afternoon who provided us with a ‘master class’ on GVHD and kidney function. It was all very informative in terms of Steven’s specific situation. There is nobody like Socié to level a scenario down to basic essentials and be totally objective about them. He was not totally despondent, although not entirely optimistic. The message was that while Steven has not responded wholeheartedly to the steroid treatment, he has not been entirely resistant either in that the GVHD has been arrested, but not alleviated. We need to wait and see what the weekend and Monday brings, before things are clearer.
Steven was absolutely tired today and couldn’t stay awake at all. We have been with him all day, wishing him and loving him better.
Love to all,
Evelyn, Matthew, Steven and Ellen
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.
5 comments:
Dear Evelyn, Matthew, Steven and Ellen,
We keep hoping that Steven will recover. At least the GVHD has been arrested. Thinking of you all,
Cristina and Bert
A glimmer of light. We are with you in Spirit wishing and praying for Steven to hang in there and he will win through eventually. It was never going to be easy. it is all new territory and as you have said nobody could prepare you for all the scenarios. Prayers, Hope and Love are available in abundance.
God bless you all
Auntie Mae and family xxx xxx
Sunday night, we have read the latest updates & are so sorry to hear that things are still so very difficult for Steven. Each new week brings new hope however & lets pray that things can indeed improve. Declan is here visiting Brussels this weekend and we said a prayer in St Anthony’s in Kraainem this morning for Steven. Keep the spirits up and lets hope for the best.
Dear Steven,
A lot of courage, to you and to the people who are so near to you.
Nico
No news is good news? Sincerely hope so. Take as long as you need Evelyn. It cannot be easy to sit down and write anything when you must be bone weary. We are continuing to pray for Steven and you all. Peace and love be with you.
from Auntie Mae and family xxx xxx
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