Dear everyone,
Welcome back Auntie May, we missed you! Glad to hear Margaret is a little better, though still very delicate.
The beginning of a new week at St. Louis. Aideen left this afternoon and we really feel her absence – she's such good fun and company.
Steven was in really good form today. He was informed this morning that the results of his chimerism test shows 100% donor cells. This was obviously excellent news and everybody was mightily pleased. He still has cells from both cord bloods at roughly a 70/30% ratio, but as you may know, one of the cord bloods will eventually assume overall cell dominance.
He was also furnished with a booklet about what to expect from his daily life, once out of hospital. Steven had just started flicking through this, but has a positive attitude and is beginning to feel that things will be manageable. A lot of patients in this position become very nervous about being discharged into outside environments. They, naturally, feel very vulnerable and worry about coping without the 24 hour medical attention they have been receiving. Steven has concerns but not real fears of this order. I feel it's really good that he is beginning to feel self confident about the management of his current medical needs.
The exercise regimen continues unabated, with Steven gathering speed and strength daily. He already seems to be sprouting hair back onto his head and chin, which is initially appearing as a very fine bristle.
So, once again, we are happy to be able to report such positive news from Paris. Long may it continue!
Much 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.
4 comments:
Hi Steven
We're back in Pottery Road now after a lovely week in Cork. Pity we just missed out on that lottery ticket sold in Cork city rather than Youghal where we bought ours! We're all feeling refreshed and are delighted with the great news from Trefle. Wonderful about the donor cells and your plans to get home in the near future. Lots of love from us all.
Marian and Michael
Hi Steven
I'm glad to hear your hair is growing back again! I just wanted to tell you that I got a new bike today and I love it. It's an adult bike as I'm as tall now as Granny and catching up with everyone else too. We have another month of holidays before we go back to school. (I'm secretly looking forward to it as I'm going to be in 6th class!) We hope to see The Simpsons movie this week as I've heard that it's really good.
Lots of love
Nora xxxxx
Hi Steven
I love you and I'm really happy to hear you are feeling a lot better. I got a new saddle for my second hand bike today but when I'm bigger Mama promised to get me a new bike just like Nora's! My friend Elise came to visit me yesterday. She used to be in my school but she lives in Bremen in Germany in a windmill now. Mama says we're going to visit Berlin, Bremen and Brussels next year so we hope to see you then!
Lots of love from Joanna xxxxx
Hi everybody! What a joy to read the daily news especially as it is remaining so positive. It was lovely to read the Doorley messages to you. I can vouch for Norah being tall, God bless her and Joanna is coming up fast also. They have the most gorgeous smiles and lovely personalities. I don't have to tell you that though. Actually they looked great and obviously enjoyed their holiday. Shame the adults have to return to work so soon. I realised this am that we did not see Joseph. If I get back to ireland I hope we will meet him then.
Today Julie, our older daughter, visited and we caught up with all our news. Tomorrow we are to have the pleasure of our Grandson, Christopher, visiting. He is 14 years old. He has such a busy life we almost have to make an appointment to see him. He is very Sporty- Golf, Cricket, football, swimming, and lately playing Ten Pin Bowling. He was only 7 yrs old when he got his first Golf handicap. He is coping with the changes to his family life and seems to be happy TG. His school reports were more than satisfactory.
On our way back from the airport yesterday, we stopped to have a meal at a Travel lodge place. A young family sat near us. Their little boy about 18 months old. he was very lively after his feeding and wanted to run about. We paid him the attention he demanded etc. As we left he ran after Joe followed by his Mum. Dad came from another direction and stopped Joe to ask Are you Mr Kulka? Yes, Joe said. Well I was telling my wife about you and how good you were when teaching my brother and I Technical Drawing. His brother became a Draughtsman until they became obsolete. Joe used to drive the old DS Citroen then and this chap remembered it. The family live in Gillingham and were returning from a holiday in Wales. Small world!
We still have to meet Pauline and family but we have spoken on the phone and texted each other. Iain is busy at work at the Gillingham Leisure Centre and open air swimming pool.
Today was a lovely sunny mainly warm day TG. Got all my washing dry. We didn't do much as we are still recovering from our travels.
Hope you all have a good nights rest. God bless and love from
Auntie Mae and family xxx xxx xx
Dear all,
We're really delighted to hear the good news. It's also great that Steve is in such a shape to be exercising. I'm sure he's even doing more than me (Cristina), the laziest of the laziest human being in the northern hemisphere. It's so good to hear about his possible release this week!
Lots of love to you all,
Bert & Cristina
Very strange being back in Dublin, I cannot believe that yesterday I was still happily with you all. I can now picture Trefle Trois in all its glory with its colourful medical team and I should say a still very handsome Steven, being bald suits you! Thanks for such wonderful hospitality Evelyn and Matthew, quite amazing really given the twice daily routine of food runs with delicious food to Steven...a well oiled machine...
With much love
Aideen xxx
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