Dear everyone,
Firstly, Steven continues to be in good form and positive mood. We haven’t had a whole lot of further developments today, so I will provide a brief update.
The central line was re-inaugurated last night, which was very good news for Steven. His arms have acted as pin cushions for so long now that nurses find it very difficult to find a vein and need to do a lot of painful poking before success is achieved. He was very pleased to gain increased mobility, at least around his room, as a result.
Yesterday’s x-ray showed an improvement in the pneumonia. They have not been able to identify the particular bacteria involved, but the fibreoscopy also showed that there was less to worry about than previously considered. Dr. Robin feels that the antibiotics have already done a good job and that Steven’s neutrophils had also jumped to his defence to help with the healing. Obviously, it is not over yet, and he is still on intravenous antibiotics to clear up the problem.
More worrisome, perhaps, is the fact that they have now identified traces of the herpes virus in his blood. They have added a new intravenous antiviral medication to battle this. As nobody in the hospital seems overly concerned about this, I guess we shouldn’t be either. The opinion is that it is still very far from being disseminated through his system, as this would be potentially very dangerous.
They are talking about a possible discharge from the hospital for next Tuesday and have explained that this would entail having his treatment continued at home. (The return of the biker nurse, methinks!) This is the one item of news that Steven seized upon and for him it clouds the significance of everything else. He cannot wait to get his heels out the door!
Medically, everything else appears to be stable. He has no temperature and his blood pressure and oxygen levels are also normal. The good news was that his white cells have bounced up to 2,500 today, which is marvelous as initially nobody was providing any guarantees about their spontaneous recovery. His isolation restriction has also been reduced – visitors now only need to wear masks, as opposed to the full gown, bonnet, gloves, bootees etc. Eating habits remain unabated.
That’s all for the moment until tomorrow…….
Evelyn, Matthew, Steven and Ellen
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:
Oh you poor darlings- all of you. I did not check on Steven for a few nights as I was out of sorts etc. It was such a shock to read the latest reports. Thank God all our prayers have been answered again. I had a Mass offered for a very special man, James Brophy, who I believe has been helping Steven. Some day I will tell you about him. Steven darling you are some special young man to go through so much and go on so positively. I know all sorts of things can and will happen still but you seem to have a great team working with you. Welcome back again Ellen. Hope you can return to The 'Pool with an easier mind. Good luck with your studies in the months ahead.
Thanks again Evelyn for keeping us so well informed and for explaining things so clearly. Our hearts go out to you, Matthew,Feargal and Ellen. Prayers will be increased by us, at Church and amongst the various Group, Unions organisations etc. So many people are aware of the situation and continuously enquire about you all.
God bless you all and give you strength and courage. Love to you all
from
Auntie Mae and family xxx xxx
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