Well, the temperature is still high today and the hunt for the possible source continues unabated. Socié checked in on Steven early this morning. This was quickly followed by Dr. de Latour and an x ray of his chest and lungs was quickly organised. The radiographer felt that there was something showing on one of his lungs, so yet another scan has been requested. (Steven has been scanned so often now, and from so many angles, it must be a record!) Up until I left a few minutes ago, this scan had not yet materialised, but from experience I know this often doesn't happen until very late - past 11pm sometimes.
Matthew and I had an appointment with Dr. de Latour this evening at six just to get an update of how he sees things progressing. He is just WONDERFUL! He feels that things are okay primarily because they view Steven as being healthy going into transplant, and the fact that he remains alert and moving well, with markers such as blood pressure etc. all under control. He had some concern about the lungs but feels that if an infection does resurrect itself, then they have caught it in plenty of time and have the antibiotics to deal with it.
Steven is still feeling discomfort in his stomach, and now his throat. It's not an intolerable thing, just very bothersome to have it nearly all the time. Lunch didn't stay down for very long today, so I think there needs to be a serious re-think of what he is eating and how often. Not sure his stomach can cope with a large, sudden intake of food, and his appetite is certainly not up to it either. In response to this, a large bag of intravenous nutrition has been added to his regime to provide all the sustenance needed. He is still encouraged to eat whatever he can, whenever he can, and he did fine eating some of his evening meal.
Mood-wise, Steven is a little grumpy (highly understandable) but very determined (great!).
We should have scan results by tomorrow. Hopefully, all will be well.
Love as ever,
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:
Hi there Steve, This is Ellen's aunt Mel and cousin Fionn wishing you a speedy recovery. I know we have never met you but from reading your parents diary on your progress and all the info on your condition we just had to send our best wishes to you. We will keep up to date with you. Mel, Donagh, Ciaran and Fionn from Ireland.
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