Okay, it's a bit later this evening. Feargal arrived and we had to entertain him for a bit and find out all the latest from Bruxelles, so I am delayed 'in a good way' at getting to the daily communication. His knee is much better, by the way.
Steven was again in very good health and form today. His news of the day was that he was now allowed into the 'great outdoors'. This meant that we had two separate half hour periods, in which we patrolled the grounds of St. Louis. Luckily, today was a beautiful sunny day and there is a very pretty courtyard in the hospital which dates from 1607 (they celebrated their 400th centenary in May), so it was a nice stroll. Steven was incredibly appreciative of the fact that he was outdoors in the air and sunshine. It's amazing how deprivation makes us so aware of what we normally, daily, take for granted. He did this, all cloaked from head to toe, of course, but it still felt 'so' good. He is amazingly strong on his feet. Most of the other patients I have seen make preliminary excursions from Trèfle have done so in wheelchairs, at least initially.
Matthew and I met with Dr. de Latour this evening. He is just such a nice guy! He had preliminary results from the chimera test – just received on his computer – as he proudly declared – Steven's cells are donor cells. He cannot tell the precise percentage yet and neither could he identify from which cord blood source, but he was quite excited. He feels that to have 4,000 white cells so early from cord blood is fantastic. According to him, the haemoglobin and the platelets will come in much later. Red cells take at least 21 days to mature from their genesis, so he has no worries. He is envisaging a hospital release for about Friday week, it all continues well. He also stressed the point that 'exercise is key' from here on. Steven may need to rely on insulin for the period of time he is on corticosteroids, and his kidneys need monitoring. There are no major worries regarding the 'red hand' problem.
So, it all continues to be good.
With love, especially to the Carroll family.
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.
No comments:
Post a Comment