A quiet, uneventful, time in the hospital today, thank goodness - no complaints about that.
Steven was again looking good and alert. He was taken off the oxygen this morning, which he was mightily relieved about as he hates having that plastic nose piece stuck up his nostrils. His blood oxygen is just about holding its own at the moment and his temperature remains normal. However, he continues to have great difficulty with sore throat and oesophagus which makes eating and swallowing a real trial. This seems to have worsened since yesterday. In order to ease this situation they have put back up the morphine pump, but only as a booster for when the pain is really bad, and for just before meal times to enable him to eat more comfortably. Steven is very reluctant to use the morphine as he doesn't want to return to needing oxygen, but the morphine apparently is the best drug for this problem and has been specially adapted for this purpose. Naturally, Steven finds this 'lesser of two evils' situation very irritating. The result is he is trying to hold off on the morphine as much as he can, but then has to suffer the resulting discomfort. Understandably, his mood today was one of growing frustration.
At the moment, the bright spot on the horizon is Ellen's arrival on Monday evening. I think this will improve Steven's present disposition enormously, and Matthew and I are also looking forward to Ellen's good company during next week.
For any of you who might be just a little curious, trèfle is the French word for clover. (All the different wards and sections in St. Louis are named after various plants and flowers.) A lot of the logos for Trèfle 3 depict a four leafed clover (for good luck I guess) but more often than not the symbol just looks like a bit of shamrock. It lends a nice 'homey' touch!
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:
Hello again. Have enjoyed a lazy but wonderful day in the back garden and later moved to the front one. For weeks we have had more like Oct/Nov weather. We even had the heating on a few evening. So today we revelled in sunshine, now and then a cooling breeze. I am trying to bring a bit of the outside world to you. The Tour de France will come through the Medway towns tomorrow. So called because they are on The River Medway. Spoke with your uncle Michael this evening. He had been to see Tom and Terry, came away with copies of the print-outs Joe mentioned.
Hope you have a good night, Steven. Thinking of you all. God bless from
Auntie Mae Joe and family.
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