Dear everyone,
Today has been the most difficult day of all. You will all understand if I keep things very brief.
I arrived at about 10:30 this morning and was very impressed by Steven’s lively and awake mood. The nasogastric tube was still in place but that was no surprise. At 12:50 exactly (I know the exact second because I was so shocked) I noticed that there was blood in the tube. Trying not to be too alarmed I called the nurse and eventually Anna (the new chef de clinique). Both assured me that this was fine and possibly a minor stomach trauma.
Well, the bleeding has continued all day. They are trying to tackle it with added platelets and plasma, which has blood clotting properties. Still the bleeding goes on. The medical team are now much more concerned and urgently want to see an end to this and any residual diarrhea.
It is now 10:43pm. Yannick is the night nurse, thank goodness, as he knows Steven very well. There is still blood in the tube.
Matthew and I will stay as long as possible this evening (all night if necessary) until we feel, or we are assured, that it’s alright to leave.
Needless to say, Steven needs everybody’s thoughts and prayers to get him through this very treacherous period.
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.
3 comments:
So sorry to hear of this latest setback. Perhaps it is just a blip and the bleeding is worse because of his lack of clotting properties. Yes of course they want to stop it quickly and I am sure they will. Our thoughts and prayers are truly with you all. Mass in the morning will again be Offered for Steven. Holy St Jude interced with our merciful Father to help Steven through this new situation. Sacred Heart of Jesus we place all our trust in YOU.
Love from
Auntie Mae and family xxx xxxx
Dear Evelyn, Mathhew and Steven,
We are very sorry to hear of this further complication. Our thoughts and prayers are with you.Courage to you all to get safely through this ordeal.
Cristina and Bert
Hope today has been a better one. I know not a lot happens in the hospital at the weekends. Our hearts are torn for you Evelyn and Matthew. You are both so wonderful and needless to say Steven derives great comfort and strength from you. God blessings on you all for now.
Love from
Auntie Mae and family xxx xxx
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