I'm really sorry that I didn't get to write the blog last night. By the time we arrived back from the hospital it was just so late and we still had to eat. Steven's promenade after dinner tends to delay things – but, of course, we have absolutely no complaints about that! I hope nobody was unnecessarily worried about the absence of news.
Steven continues to do really well. He is exercising as much as he can and really enjoying his food. A very tired Dr. de Latour (who apparently was up all night on call) told us today that they are still pleased, despite elevated kidney and liver levels. They suspect some slight GVHD in the liver, but feel this is normal enough for this point in time and nothing to really worry about. The corticosteroids will be reduced next week and this should impact his blood pressure level positively. Insulin levels are still being adapted and Steven is now self-injecting. It is envisaged that his release will be round about tomorrow week.
Yannick (he of the eyebrow piercings) has been on duty for several days now. He is quite amusing as it's a bit like watching 'your average bloke' turn his hand to nursing. I can only imagine that Yannick's life must be fully of minor mishaps as the word 'oops' emerges from his mouth with such great alacrity. The stories we could tell. The important thing is that Steven finds him good company and really trusts his medical skills.
Yesterday, Yannick announced that Steven has a new microbe in his central line. Several flourishes of activity later, it is felt that all is under control and this, apparently, is not the same bug as before. We strongly hope that this is the case and that there will be no further surgical replacements of the central line.
That's about all for the moment. The weekend has been quiet, as usual, in the hospital.
Love to all,
Evelyn, Matthew, Steven and Aideen
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:
Hi again. I missed being in touch but have been thinking of you all. Came home from Ireland today and we feel we will need a week to recover.... It was a dreadful journey over on Monday not knowing what we would hear on arrival. Thank God Margaret is still progressing. She is still very weak and has been so seriously ill that it shows. It was awful having to part from her. I wished I could lift her up and carry her home with me. News iremains positive so we hope and pray she will continue to improve. Steven you are amazing us all. I got up to date with your reports, Evelyn, when we visited Tom and Terry yesterday. An added bonus was the arrival of the Doorley family from their holidays. They had a wonderful time but you will be hearing all about it from Marian, I'm sure. By all accounts Steven the family will have to keep fit to keep up with you on your Race Abouts. I will away to bed now and hope to be more human tomorrow. Good night and God bless you all. Love from
Auntie Mae and family
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