Dear all,
I can hardly believe this blog is dated November 1st and I am still writing from the hospital. The date of the first blog was June which now seems a very, very long time ago.
Steven is not feeling very good at the moment and he states pretty consistently that he is feeling really unwell – very unlike him. This ‘unwellness’ mostly consists of feeling extremely exhausted and completely lethargic which results in a lot of sleeping throughout the day and night. Today his temperature has been in the high 38s and his appetite has diminished considerably.
Yesterday’s scan showed that he had two nodules and a larger lesion in his lung. Dr. de Latour explained this afternoon that they feel the nodules are areas of concentrated viral activity, which harbour many viruses (at least three!), as yet unidentified. The lesion they are not sure about – this could be bacterial, viral or fungal in nature. Yet another fibreoscopy has been arranged for tomorrow morning and Steven is already resigned to this as the sequence of events has just become all too predictable at this point. De Latour feels that Steven’s lungs have now become so vulnerable that they are inclined to pick up almost any infection or virus floating around. The further complication is that the main problem with viruses is that they are untreatable with antibiotics and can only be resolved by the body’s own immune defence system. We all know the difficulties this presents for a post transplant patient.
It is also suspected at this point that Steven has become resistant to the Foscavir, his anti-herpes medication – in other words, it’s not working very well. They are looking into this and will change the medication if their suspicions are confirmed.
More will be known tomorrow after the fibreoscopy.
Right now, Steven has just finished his dinner (all of it) and is tucking into yoghurt, a banana, and low fat, low sugar, chocolate mousse. He’s definitely looking brighter than earlier today.
Will let you know how things transpire tomorrow.
With 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.
1 comment:
Yes the time has flown by. What a lot you all have endured in that time. I'm sure I speak for the majority of your family and friends when I say we are really with you in Spirit. If prayers, thoughts and wishes can help you know you have them in abundance. God bless you all
from Auntie Mae and family xxx xxx
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