Dear everyone,
The white cells are at a wonderful 1,500 and everybody is happy!
Steven was very bright and wide awake today. He is still spending the bulk of his time on the computer; the PS3 is also being used quite a lot; many DVDs have already been viewed and he is starting back into his reading again. Before he entered St. Louis he was enjoying reading "100 Years of Solitude" by Marques which takes a humorous look at insularity in the Colombian rainforest – ironic reading choice given the degree of isolation he's had to endure the past weeks. Now his reading interest has slumped to a book called "Merde Actually" – which may also be particularly apt, depending on how you look at things!
After my arrival today I immediately learned that yet another scan had been requested. It was quickly explained that this was just for monitoring purposes and not for any suspicious reason. They were fairly prompt in getting this underway this afternoon and the results were returned quickly. All the indications were good. The lung virus seems to have reduced very much and they concluded that the medication is working very well.
The entertainment value of eating 'quantities' of food at mealtimes now seems to have returned. Steven tried eating lunch without his morphine boost today but his throat was a quite sore afterwards. It looks like he will need to continue with the painkillers for a while longer.
Today, there were signs that boredom is beginning to seep into the situation – Steve was quite glad to get out of his room for a while, even if it was only for a scan. I take this as a sign that he is really on the mend. While I say this, I have to remind myself not to jump ahead and be overly optimistic about the recovery time needed. We can only take this one step at a time.
Have a good weekend one and 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.
1 comment:
Hi Steven
Great news all week and we're all so pleased for you. Nora and Joanna have been busy making cards for you so hope you get to see them through the glass when they arrive in next few days. We're all just back from seeing HP and the Order of the Phoenix so from Dumbledore's Army we all wish 'expeliarmus' to any problems and we wish you a magical recovery! Lots and lots of love
Marian,Michael,Nora and Joanna xxxx
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