Hello everyone,
The news of the day is that Steven will definitely be discharged sometime on Thursday. There was a change of mind about a Wednesday release due to the vagaries of his blood sugar. Steven’s diet has had to become quite restricted in many ways. Not only have desserts been banished, but now items such as pasta, rice and yoghurt, along with the quantity and timing of food intake have all been factored into the equation. It seems a little tedious but I honestly feel the food situation will be easier to manage once Steve is at home. He doesn’t seem hugely bothered by all this and he is by no means going hungry despite the dietary limitations.
The blood counts were again a little strange today. White cells came in at 6,200. That’s about a 2,000 cell increase over yesterday’s count. Yannick tried to assure us that this was entirely possible, but, I have my doubts. There was also an interesting estimation of reticulocytes (these are like baby cells that are the forerunners of haemoglobin) at 62,000 which is in the normal range for these particular cells. Accordingly, we should be seeing some stabilization of Steve’s haemaglobin soon enough. That would be just fantastic.
Steven had a visit from the psychologist today. She has tried to see him several times but he kept telling her to go away. (I try not to be personally offended by his rejection of the therapeutic merits of psychologists!) Today, she told him that he had mentally handled the whole transplantation process very well – that’s got to be the understatement of the century!
That’s about all the news for now.
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:
Dear All,
We're glad to read that Thursday is the final date for Steve's discharge from hospital. Despite his dietary restrictions, there are a lot of yummy foods he can eat (fish, chicken and lots of vegetables) and Evelyn is such a great cook that Steve won't get bored of those foods. We practically follow the same diet in summer because we try to lose/not gain weight due to "Operación bikini", a good old spanish tradition related to summer fashion and beach exposure... So you're not on your own, Steve!
By the way, I (Cristina) am glad to hear that I have contestants for the laziest human being in the Northern Hemisphere...
Lots of love to you all,
Bert and Cristina
Morning Steve. Glad you impressed the 'psychologist' with your steely disposition, tenacity and I suspect charm - Looks like it is now a bring it on moment for Thursday. Good luck to all as you move towards the next phase.
All my love
AIDEEN
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