Dear everyone,
We arrived this morning just as Steven was waking up, around 10:30. He seemed a little groggy and it took him time to come around, but he had had a very good night’s sleep. Any morning is quite busy in the hospital as all of the room cleaning and doctors’ visits take place. By the time, Steven had done his daily wash, he was really much more alive and very much himself. He did a few exercises and was very talkative. We listened to some stories from nurse Daniel about his grandfather who was a hussar in the first world war and survived the four years with just a leg wound. I am always very touched by Armistice Day – millions of an innocent generation led by noble intentions into an absolute slaughterhouse.
There seems to be some improvement in Steven all round. Although there is intermittent fresh blood in the nasogastric tube, this is usually resolved by the administration of platelets and plasma. They currently need to maintain Steven’s platelet count above 50,000; whereas the average range for all of us with normal blood production is in the region of 150,000 to 400,000. You can immediately see the sort of deficit that Steven is dealing with when it comes to even average coagulation of a wound. Essentially, he now needs to be transfused nearly every day, or every second day, to keep this type of internal bleeding in check and provide a chance for healing to take place.
Dr. Ribaud saw Steven early this morning and while Matthew and I were present she popped her head around the door to say they feel Steven is more stable than yesterday or Friday.
I need to warn everyone about getting overly optimistic that this problem is fully resolved – it isn’t! There is some improvement but this challenge is far from being overcome. For the very first time, Steven is concerned about himself and requests that Matthew and myself watch over him, especially after he falls asleep. As if we would ever dream of doing otherwise!
So, tomorrow is the beginning of a new week. Hopefully, more progress will be made and the road to recovery will become clearer. Naturally, I will keep you all informed.
Love to all,
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.
3 comments:
Dear Evelyn, Matthew and Steven,
Good to see that today again some small progress was made. Hope this continues. Our thoughts are with you.
Bert and Cristina
Any improvement is worth hearing about. We are in no doubt that Steven has many mountains to climb before any kind of stabilising can be seen. Like you I guess we just hope for each hour, never mind a day, shows a little move forward. God bless you all. May His arms enfold you in His Loving care .
Auntie May and family xxx xxx
Dear Steven, Evelyn and Matt
Thinking of you all constantly and hoping that this week will be an easier one for you.
With all our love
Marian, Michael, Nora and Joanna xxxx
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