Dear everyone,
Today has been pretty much the same as recent days with no great changes. Steven still has the NG tube and the oxygen mask to ease his breathing.
This morning Dr. de Latour and Anna did their rounds. Latour explained that for the moment the treatment will remain as is, with no increase or decrease in the current medications. They are concerned again about Steven’s lungs now that they are harbouring some fluid. Another x-ray and scan were performed to ensure there is no infection. This is a growing concern now that Steven is on high dosage prednisone (steroid) which acts as an immunosuppressive, and leaves him susceptible to many potential infections.
The NG tube has been pumping blood most of the day as they ran out of platelets – there is an ongoing problem with platelet availability in Paris. So instead of 12 hourly transfusions, Steven has had to wait more than 24 hours to be topped up. Not anybody’s fault really, just the age old difficulty in getting donors for blood products. It takes a few hours to harvest platelets and not everybody is willing to block this amount of time into a busy schedule. If any of you are interested, you should contact your blood donation service as people’s lives really do depend on their availability.
I will leave it at that for this evening as we are all very tired.
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.
2 comments:
Have been a donor since aged 18. The turn out for the sessions is quite strong in this area. Hope the supply improves for Steven. Our thoughts are as ever with you.
God bless and love
from Auntie Mae and family
Dear All,
We hope that the civil servants' strike in France is not affecting you. We've heard that medical staff is also called on strike in all state hospitals. Surely they wouldn't stop working in your department in any case, would they???
Lots of love,
Bert and Cristina
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