Dear everyone,
Monday, the start of another busy week. It's amazing how animated the hospital is during the week in comparison to the weekend. What I call the 'perfusion (drip) population' in the lobby really proliferates on weekdays. I don't know if this a feature of modern medicine or a St. Louis thing, but nearly everybody down there is attached to a drip of some kind, wandering about the hospital ground floor, and outside in the courtyard. I suppose it saves a bit of space and avoids some tedium for the patients at the same time.
The good news from de Latour is that, providing all continues to go well and proceeds as planned, they may discharge Steven from Trèfle within ten days to two weeks. Following release, he will have to remain in Paris, of course, and check in to the haematology clinic every second day. Needless to say, Steven was in really good form as a result of this decree! He decided to emerge from the room and go for a walk (more like a gallop I would say) around the corridors. I was very impressed that he did so well on his feet – very steady and energetic – really not like a post transplant patient at all. For his next excursion he will be allowed outside of the transplant unit, and maybe even outdoors. He can certainly join the wandering throng in the lobby.
The blood counts were good. White cells came in at 4,300, with neutrophils at 3,800 and haemoglobin at 9.8. We are approaching the time when they will want to see a rise and maintenance of the haemoglobin and particularly the platelet level. Platelets are the components in blood that enable coagulation. These cells have a very short lifespan and are the last to stabilise following transplant. Steven will have a platelet transfusion later tonight as he is having his central line re-implanted tomorrow morning at around 10am. This means another trip to the operating theatre (platelets essential) and some discomfort afterwards. In fact, Steven will be glad to have this done as he finds the drip attached to his hand very cumbersome.
We are all sorry to hear that Aunt Margaret (Matthew's father's sister) is feeling poorly. We will be thinking of Margaret and all of the Carroll family during this difficult time.
With 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.
2 comments:
Hi Evelyn,
Delighted everything is progressing with Steven. I can feel your pain when you describe your experiences in the hospital. Life becomes a bit surreal, as if the outside world is on a standstill! And definitely, Monday morning is strange. How does the hospital manage at the weekend without all that staff!? Best of luck to you all. The Quiltys in Aglish are rooting for you!
From Liam Michele, Mia and Noah.
PS. Noah is doing really well now. Since his operation he has come on a ton. His latest hobby is trying to headbutt me!
Dear Evelyn, Matthew, Steven and Feargal,
Wel done, Steve. Amazing to read how things are going: we are very happy. Very happy that things are going so well. Keep it up, Steve!
Cristina and Bert
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