Steve's white blood cells have now risen to a staggering 2,100. This is higher than they were during many of the weeks before transplant. What's also interesting is that his haemoglobin is now hovering at around 9.0 (normal range 13.5-18.0); whereas, prior to transplant all the transfusions that were being poured into him on a regular basis just didn't seem to hold at all. It just all seems too good to be true: I'm afraid to dare to believe that this is actually working out so well. I can only attribute it to the surge of goodwill Steven has received from all quarters, with prayers being offered across all religious denominations; and of course Steven's own utter determination and cool, calm and collected nature.
This was a quiet Saturday in the hospital, as usual. Virginie was on duty again (very small, Indian, direct, forceful personality, no nonsense, with a raucous laugh.) Steven likes her a lot - as a nurse. She is most informative. They have now discovered from cultures taken on Thursday that Steven has an infection in his central line. This is the line protruding from his chest into which all of his medications, blood products etc. are transfused. Steven would not be aware of this as he has no symptoms to indicate a problem. This line is kept meticulously clean by the nurses and is completely changed once weekly. Everyone appears to be unconcerned about this infection as they feel they have identified it early and it is already under control.
Rachel Mulligan came to visit Steven this afternoon which was great as he got to see an old friend and also as it breaks up the monotony of the 'perpetual parent syndrome'. I don't believe Steven had seen Rachel since they were both in secondary school in Ixelles. She is working in marketing for the Four Seasons Hotel here in Paris. It was very nice of her to make the time to visit and also supply him with a bag load of DVDs into the bargain.
Today was very, very warm in Paris. It is also Bastille Day – lots of activity with fireworks and bangers being let off in the streets last night and tonight.
That's all the news for now.
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.
3 comments:
For some reason I had problems sending messages. Great to read your latest news Steven. It is likely to become tedious now you are getting your health and strength back. Go with the mood you deserve to be able to react now and then. God bless you, Love and hugs to you and the family
from Auntioe Mae and the family xxx xxx xxx
Dear all,
The fireworks of Bastille day were there also to celebrate those 2,100 blood cells in Steve's body!!! Nos félicitations!!!
Keep up the good work. The next report will come from Brussels, because we're leaving Marbella in a couple of hours. Lots of love,
Bert and Cristina
Hello to everyone, this is just fantastic news we are all so thrilled for Steven. You are doing brilliantly steve,everybody are constantly thinking of you here in Waterford and willing you to get better. Bíodh biseach ort go luath, grá mór ó Laura de Paor x x x x x
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