Well, the new central line is in place and all went well with the procedure. It was somewhat delayed, with Steven eventually being brought down at around 1:00pm. This was not a problem in itself, but, as he had to fast from midnight last night, there were some hunger pangs to be endured. The line appears to be not quite as sore as the first time it was placed, so that's a relief.
Steven had a very interrupted night's sleep last night due to an over zealous new nurse who wanted to be constantly checking and switching on bright lights in the middle of the night. This combined with the aftermath of today's anaesthetic meant that he was quite fatigued this afternoon and slept quite a lot. By dinner time, things were back to normal. He spent some time cycling, had a good dinner and was planning on scouting around the corridors outside of Trèfle later on with Matthew.
Cyclosporine was reintroduced today as an oral medication. They feel his system has been well rested from its removal in intravenous form, so he can now tolerate this lower dosage format. The majority of the medication now has to be consumed as either as tablets or medicine, and it's a considerable amount.
Blood counts came in at 4000 for the white cells and 8.9 for haemoglobin. There is still no sign of a result from the chimera test. Steven's hands are still very red and are now peeling. This is being viewed as a mild form of graft versus host disease, and there is constant checking for any further signs.
Feargal will return tomorrow night for another day or two. Although it's not too inconvenient to travel to Paris from Brussels on the Thalys, it's been really great of Feargal to be so supportive. It hasn't been the ideal summer for him in many respects, but he hasn't complained and has managed very well to keep things ticking over in the house – there's been an awful lot of grass cutting and pool cleaning to be done 'tout seul'!
Still thinking of the Carroll family and Auntie Margaret……
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:
Keep up the good work, Steve! I think that the over-zealous nurse might have wanted to check you out... a bit too much I'm afraid. Let those white cells keep on growing!
Love
Bert and Cristina
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