Dear Everyone,
We arrived in Paris early on Thursday afternoon, and by about 4pm, Steven was checked in and in his room. He has had some luck as his room is quite nice and has two full length windows with a view outside. Not all of the 16 rooms here have quite so much light, and the one Steven was originally shown during his induction visit was quite small, dark and oppressive.
It's funny how the practicalities of travel, getting organised and settling in somewhat normalised what we anticipated to be a difficult experience, to say the least.
Daily life here on Trèfle 3 has been quite uneventful so far, thank goodness. By Thursday night they were already administering zofran (which Steven fondly calls his anti-puke medicine). Friday morning saw the start of the chemo proper, along with liberal doses of antibiotic, anti-fungal, anti-viral medications and litres upon litres of fluid to flush out the toxins. This conditioning will continue until Steven's immune system becomes entirely depleted. Only then will his marrow be ready to be re-populated with his brand new stem cells which should then take over the work of creating a new immune system generating its own blood cells. The date now set for this cell graft is June 28th, which is next Thursday.
Steven has not yet felt even slightly nauseous. Instead he has been doing Olympic levels of eating. He claims that food becomes a highlight of the day in a reduced environment such as this. Long may his appetite last! Matthew and I have been cooking two hot meals a day and relaying them here to the hospital as the food here is really the darker side of awful. Surprising, when you consider how renowned Paris is for its fine food.
The staff in this unit are really wonderful - so helpful, with the ability to make almost everything sound positive.
In all, it's early days. It's important not to project too far into the days ahead as this is a very long road. My feeling is that every day free of nausea has got to be a bonus and we will handle problems only as they arise, not before. I am happy that at this moment Steven feels fine, is in good form, and that's just great!
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:
I miss you Steve!! Am thinking about ya all the time. You're the best avocado buddy ever!!
xxxxx
Och, sure he's always had the munchies :)
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