Dear all,
We arrived around lunchtime today to find Steven in relatively good form, as the ‘HAD’ coordinator had told him that it was likely he would be released from the hospital tomorrow, and that everything was organised for the ‘hospital at home’. He quickly followed this by informing us that he had had a temperature in the morning and at the lunchtime check ups. Naturally this sent the doctors into a spin of enquiry as to the why and where of the temperature. An x-ray, peripheral (from the arm) and central line blood draws quickly ensued to try to identify a source. We will know nothing about results until tomorrow at least. It’s not likely that he’ll be out of there by tomorrow, I feel.
The Foscavir drip continues. This is a very strong medication with a multitude of side effects, one of which is backache. It can also have a very deleterious effect on the kidneys: as a precaution, he has been taken off the cyclosporine. Steven now has an unceasing infusion pump of acupan (painkiller) to help him cope with the pain. It takes the intensity out of the discomfort but doesn’t banish it completely. He also had awful leg and feet pain today.
By late afternoon, the temperature had disappeared and hadn’t returned by this evening. Steven feels himself that the Foscavir is really working on the herpes, as currently, he cannot see any mucus or white spots in his throat.
We left Steven this evening, watching the Barcelona/Lyon football match.
Hopefully, tomorrow will bring good news.
With love,
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:
Dear Evelyn,Mathew and Steven,
I am Romain ROSITI and I met steven in the university of Manchester in september 2005. The last time I saw you steven is in December 2006 if I remembered well.
I am no longer in Paris and I am working actually in Milan. Steven, audrey told me that you are actually in Paris to cure your illness.
Next saturday, I come back to Paris and I will be pleased to visit you if you are still in the St Louis hospital.
Otherwise , I will write you a longer mail to have more news about you.
Please inform me if you leave the hospital and if you come back directly to Manchester or if you will stay a few days more in Paris.
I hope the best for you my friend
See you soon
Best wishes to you and your family
Romain Rositi
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