Dear everyone,
Not a lot to report today. As you all well know by now, the Hôpital St. Louis is rather a quiet place at the weekend.
Steven was again in good form when we saw him at around lunchtime. During the morning, he had had another visit from the ear, nose and throat specialist, who reiterated the need to continue with the current treatment (transfused Zovirax 350) for the herpes until at least Monday. At this point they will be in a better position to judge how effective it has been. If things do not improve with his throat, they will try an alternative medication. This ENT examination was quickly followed by a brief consultation with the head of the pneumology service, a Dr. Bergeron, who explained that Steven will not be released from hospital until they feel they have the herpes under control: nonetheless, they are still projecting a Tuesday discharge.
Everything else remains stable. Since last weekend, Steven had been experiencing a lot of tremors in his hands that seemed to be affecting accurate coordination: today this seems to have disappeared. This may be owing to the fact that they have further decreased his steroid intake, which is always a good thing. He continues to rely on painkiller (Acupan) to relieve his back pain, which has improved, but not disappeared.
That’s all for this evening. We are looking forward to watching the Irish/Georgian rugby match later on, at nine. Let’s hope they make a better fist of this than the Namibian display.
Love to all,
Evelyn, Matthew, Steven and Ellen
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:
Hope you have a pleasant weekend. Will be watching Cork>Kerry football. What a dreadful defeat for the English Rugby....!!!!!!!! God bless and love to you all
from
Auntie Mae and family xxxx xxxxx
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