It was apparent soon after Feargal's arrival yesterday that he was limping around the house. A minor accident on a friend's mountain bike last Saturday resulted in a bad knock to his leg. Feargal thought his leg was fine but by last night it was quite swollen around the knee. The end result of this was a morning spent in Urgences (casualty) in St. Louis. Several examinations and an x ray later, they announced that there was no serious damage: he just needs a bandage and to rest it for a few days. Relief all round, as you can imagine! Urgences in St. Louis is a bit of an experience as it's mostly populated by 'sans abri' (the homeless) in various states of inebriation and disrepair. To balance this out, they have high levels of security – tough looking guys who look like bouncers and maintain a watchful presence. The 10th arrondissement in Paris is not the most salubrious area!
Another good day for Steven - looking fine and feeling fit! As regards the latter, he has now been advised to partake of some exercise, either on the exercise bike in his room, or, a few rounds of the corridor. This is an offer he is, so far, resisting.
A lot of the intravenous drugs are now being replaced by oral meds. The pain in his legs is a little better today, so the morphine booster has been withdrawn completely.
The problem of the day was the discovery that he still has bacteria in his central line. They have now removed the drip line attached to the central line, fed a dose of antibiotics directly into the central line, and have now inserted the drip line into his hand. This is not as comfortable as the central line and also limits movement to a greater degree. This will last for a few days. If the bacteria does not clear up, then they will need to re-do the entire central line, which has now totally healed into his chest, to rule out infection getting into his blood and system. Hopefully this will be avoided.
Steven's red palms continue to be a source of constant attention. The dermatologist now attends with de Latour on a daily basis and everyone concerned seems to have a different opinion of which hand is the reddest and whether that hand is paler or redder than the previous day.
White cells were at 4,200 today, but we are not wholly confident with the accuracy of that result. It seems a little bizarre. We'll see.
Steven remains hugely unconcerned by all of this and focuses on just getting about his daily business and staying comfortable. Nerves of steel!
Love to all,
Evelyn, Matthew, Steven and Feargal
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:
Poor Fearga. Hope you are soon fit. Uncle Michael would sympathise with you. This could be a hard time for all of you as the various tensions relax but ....???? Try and take each hour as it comes. The days are bringing more positive news. You are all ever in our thoughts and prayers. God bless and love
from Auntie Mae and family xxx xxx
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