Hello everyone again,
The post transplant days are now accumulating and hopefully we're getting nearer to seeing those stem cells appear. It's becoming more and more difficult to track time as there is a sameness about most of the days. Steven finds this particularly difficult and is usually unaware of what day we have.
This morning, I arrived as Steven was still sleeping. This was a continuation of his night-time sleep. It's hard to sleep solidly on Trèfle during the night as all of the patients need to be regularly checked and have their medications continuously administered which results in constant activity and interruptions, with monitors constantly bleeping for attention throughout the night. It's not surprising that so much daytime sleep needs to replace what was missed nocturnally.
Steven, once awake was in very good form. The throat and oesophagus soreness still persists but is slowly improving. De Latour came in to state that at present they have no worries about the lungs: everything from the cultures appears normal so they are convinced that the temperature problem was wholly transplant related. This being said, they still went on to take another chest x ray. I'm beginning to dread these, but am glad that they are being thorough and pro-active. Later in the day, the interne caught Matthew in the hall to say how well she felt Steven was looking today (and this is the new 'hairless' Steve!).
Ellen arrived sometime after six. It was so good to see a familiar face from Brussels and I know her presence will impact Steven really positively. Having donned all the sterile gear, including bonnet she commented, "I see there was no point in doing the hair then!" – the bonnets are not the most flattering accessory.
So, all is good this evening. Steven still looks very cute, as anticipated, but more importantly he's feeling good. Fantastic!
Love to all,
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.
5 comments:
How wonderful! Welcome Ellen. We hope to meet you one day. Have spent a fair part of today sorting and packing. Perhaps you know we are going to sell our house and move to Paphos DV. We have holidayed there for the past 14 years so we are faamiliar with the area and have a lot of friends already moved there. You had a taste of what moving islike when you went to HongKong but we are here 34 years. My word what a hoarder I am! The family are just surprised it has taken us so long to decide our move. As soon as Iain, our 16 yr old grandson, heard he said Cool! That's my holidays sorted. Weather is iffy but I did manage to get two loads of washing dry before the thunder storm broke. Nothing else of note to tell. Must tget photos taken before the hair grows back unless you go for the Kojac/Yul Brynner look. Love and hugs to you all
from
Mae. Joe ,family and friends.xxx xxx xxxxx
Bonjour Steven,
Since your father told me/and few of us (at work) about your operation, there was not a single day I have not thought of you. It started on 1/06 and continued after your transplant. I'm very very happy to read the comments of your mother and to get to know that you are well. I read that you daytime sleep, quite a lot for the moment. That's good! I wish I could do the same right now at work :) Bon, I'm waiting for the next news now.
Till soon and all the best to you,
Athelstane
Bonjour Steven
Bonjour Mathew,
I am very happy with the news.
As melhoras e um abraço para todos !
Jaime
Hi Guys, steven you are doing great keep getting better. Belated 21st birthday wishes to Ferghal thinking about you too :) Glad to hear Ellen has arrived, judging by all the lovely things steven had to say about her a marina's wedding i'm sure he will ecstatic to see her. Chin up guys, all my love Laura Power x x x
Greetings also from Germany.
We are moved and impressed by your continuing possitive fighting spirit that you are demonstrating Steven! We are thinking of you, Matthew Evelyn Feargal and medical team every day. We exercise our possitive vibes in your direction!
Keep it up!
Paul Keys and Kirsten
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