Dear everyone,
Not too much to report today as the developments have been few. The stomach siphoning continues with little respite from the discomfort. Drinking water remains banned. We have been informed that this system will remain in place for 24 hours after the tummy fluid stops flowing, which is anybody’s guess. Talk about GI blues!
Matthew and I spoke briefly with Socié this afternoon. He claims that despite the seemingly barbaric nature of this treatment, it is wholly necessary. (This is where my faith in the medical profession begins to dwindle and I have to remind myself that this is a consummate medical professional with oceans of experience in dealing with this particular problem.) There was a doctors’ meeting this afternoon and the outcome of this was a decision to ratchet up the steroid intake by another 50%. The belief is that this should help settle the GI system. The downside of this is that, as well as being anti-inflammatory, the steroids also act as an immunosuppressant which leaves the patient more susceptible to various infections. Now, where have we heard that before? I get the sinking feeling that we have come full circle and it’s a particularly vicious one.
Steven was in better form again today. Resignation once again appears to have gained the upper hand over a degree of anger and total frustration. He had a bad, wakeful and uncomfortable night and slept most of this afternoon. This evening, however, he declared he was in the mood for tv, so we watched the news on BBC World. It was a surprise to him to realize the date and the current affairs he’s missed since Monday.
We have a plethora of new faces on Tréfle 3. All four of the internes have moved on to newer pastures and have been replaced by new candidates who all look like fresh faced children to me – a true reflection of my increasing agedness! Even more of a surprise was hearing of Dr. de Latour’s imminent departure. He is staying in St. Louis, but is moving into the area of research. I am sure he will be sorely missed on Tréfle 3 where he was very popular with both patients and staff alike. He also enjoyed an excellent reputation throughout the rest of the hospital. His replacement is female, Greek, prefers to speak English, and likes to be called by her first name, Anna. She is more low key, personality-wise than de Latour, but seems very nice.
Until tomorrow.
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.
3 comments:
nt comment on your report. What is there to say? We are having very strong gales blowing at the moment. We had a deluge of rain this afternoon which really frightened us. It was sunny, bright with a bit of a blow and then suddenly the wind was howling and the windows were being lashed with rain. Oh well we did have it nice for a long while so no complaining. Clematis continues to flower, a Day Lily has burst into bloom, our Jasmin is flowering again and lots of other flowers are beginning to bloom again. It was like this in 1974 when we moved here. It was almost scarie to see all the gardens full of colour etc. Must away to bed. Feel so weary. Good night and God bless
from
Auntie Mae and family xxx xxx xx
I remember you all in my prayers. Your updates are great and I admire you all. I hope this latest treatment is successful.
Mary Fran (Lanigan) from Kilkenny.
Just thinking about you Steven.
Love you
from
Auntie Mae and family xxx xxx
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