Dear Everyone,
Today has been a much better day for Steven. They now seem to have the leg pain under control, and while it is still uncomfortable, the discomfort is nowhere near as intense as yesterday. Almost an entire 24 hours of sleep has also made a difference. Although he has slept for lengthy periods this morning and late afternoon, in between he has been alert and chatty and in fair form. Feargal spent the afternoon visiting, so that helped ensure that Steven would stay awake. This evening he is watching the tennis and has finished his dinner, so things are more normal.
It's rather strange talking to him through the plastic curtains, however it's amazing how you get used to everything, given time and need. The intense sterilisation of everything continues. All the treats we bring have to be washed in pure alcohol before they can be slid around the curtain - even the oranges and bananas.
Feargal went back to Brussels this evening but will return next week for a few days.
From here on, Matthew and I feel that this is now a waiting game where patience is vital, as we expect plenty of ups and downs.
That just about covers the update for today.
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 Guys,
We are all thrilled Steven is doing so well and we are thinking about him all the time. We are checking his progress and willing him to get better. Mam is doing the praying and lighting the candles, she is a great believer in its power.
Chin Up you guys,
Sending sterile kisses to steven and bundles of hugs to all,
Laura(your cous), David and Laura, Eve and Mam xxxxxxxxx
Hi Steven,
Hope all is going well and that the initial pain and discomfort is wearing off. It’s dull and grey here in Brussels so you are missing nothing weather wise! We are checking the blog daily and hoping that you will make good progress. Best wishes from all of us.
Post a Comment