White cells are now at 3,200 and haemoglobin hanging in there at 9.2!
A very, very hot, sleepy Sunday here in Paris. The temperature must have been above 30˚. This doesn't affect the interior of Trèfle 3 as it has a highly regulated air system, and so maintains a constant temperature of about 25˚. In fact, the ceiling all around the unit is quite low to house the highly specialised air conditioning system, which ensures the sterility of the air supply within each room. This gives a quite claustrophobic look particularly to the corridors: somebody of Feargal's height looks enormous in these surroundings. There is also always the incessant humming sound of the system. At its worst it feels like the place is vibrating – bit like being on a plane or a boat, I suppose.
Steven remains in very good form. However, he did develop pains in his legs overnight, particularly his knee joints, which didn't improve during the day. It is felt that perhaps his painkiller, acupan (which replaced the original high dosage of morphine), is not working so well as his system is now too accustomed to it. It was recommended that he increase his consumption of morphine to compensate. Not the best solution, I feel.
There is also now a minor difficulty with the efficiency of his kidneys. All scans and ultrasounds to date have shown that Steven's kidneys are disproportionate. As you may, or may not know, Steven's left kidney is much larger than the right and in fact does the work for both. This is a symptom of Fanconi anemia, but one which never caused any difficulty and of which, up until his diagnosis, we were unaware. He has been advised to drink lots of water and other liquids, which he is doing.
Both the leg and the kidney difficulty are felt to be side-effects of the cyclosporine (immunosuppressive) which is a very strong drug. They have now slightly lowered his intake of this medication. I am confident that both problems will be resolved soon. Eating continues apace – moussaka and dessert for lunch; roast chicken dinner, plus cheese and an orange for dinner. Steven's palms are now bright red and blotchy, which we will take as a very good sign of progressive engraftment.
We look forward to Feargal's return to Paris tomorrow evening. Matthew also returns to work (ie. teleworking) for half days from the apartment, as of tomorrow.
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.
1 comment:
I hope eveybody's hanging in there. I'm sure Steven is cool as ever, and that's a great advantage to him at a time like this. I'm writing to say that I'm going to be visiting my girlfriend in Paris this weekend and I was wondering what the visiting regulations were for seeing Steve. I'll be there from Friday eveninig till Sunday evening. Thanks for letting me know if an eventual visit would be possible.
In the mean time, my thoughts are with all of you.
Take care,
Alex (Vlaanderen)
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