Dear All,
At last I have this website up and running. I am hoping that this is the most convenient way to let you all have the latest updates and stay in regular communication during what we expect to be a very difficult time.
As you may all know, Steven had to spend three weeks in hospital with pneumonia during May. This was following his return from Mauritius where he had gone with a group of his buddies to attend the wedding of a friend. This group have known each other since childhood and Steven could not pass up this opportunity for a 'fun time' in the tropics - who could blame him? Anyway, on his return he developed a temperature, severe back pain and a slight cough. Of course he was immediately hospitalised in Paris, placed in isolation and pumped full of antibiotics. This was all hugley frustrating for him and us as it was totally unforeseen. Steven lost 5 kilos in his first 4 days in hospital but has since made a remarkable recovery in every respect and has more than gained back his weight.
Last Monday, Matthew and I deposited both himself and Ellen (girlfriend) to our newly acquired appartment near the hospital in Paris. Steven had a week of several examinations and further medical tests in preparation for the transplant, and on Thursday had his central line placed. This line is like a tube inserted in the chest which will be used to administer medications and blood products during transplant. Sounds bad I know, but the discomfort has been decreasing on a daily basis. Yesterday (Saturday), Matthew and I returned to collect them both and came back home to Brussels.
The plan for next week is that Steve will be hospitalised on Thursday afternoon and the serious preparation (chemotherapy) for the transplant will begin soon after.
Steven remains (as always) in remarkably good spirits. He has very low immunity since the bout of pneumonia - which we try not to stress too much about - however, he does need to be really careful of all germs and bacteria. He is off to lunch today with Ellen and a group of his friends here in Brussels. His doctors have advised him that this is ok providing he wears his surgical face mask, is cautious about what he eats and avoids very crowded places.
That's all for the moment. Will update soon.
Evelyn
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.
14 comments:
This is a fantastic idea Evelyn - best of luck to you all and love to Steve.
AIDEENX
Great idea, Evelyn and Matthew. Best of luck to Steven from all the Bradleys - Máire
Hi Evelyn & Matthew - a wonderful way to keep everyone informed and give you time to focus on more important things than answering emails in the weeks ahead!
Our thoughts are with you, the family and, most importantly, Steven at this difficult time.
With love from the Sheffield Family
Thanks Evelyn and Matthew. You and the lads are in my prayers and thoughts.
In case he can't check his e-mails for a while, can you pass on the news to him that Lola has given birth to a beautiful baby girl... named Koala :)
"Out beyond ideas of
wrong doing and right doing
there is a field.
I´ll meet you there.
Where the soul lies down in
that grass,
the world is too full to
talk about.
Ideas, languages, and even the phrase
¨each other¨
doesn´t make any sense."
- Rumi
Hi there,
Thanks for going to the trouble of setting this up - have never even used a blog myself before - it's a help to be able to see up-to-date news - makes it feel as though you're not as far away (although I suppose Paris isn't that remote from Dublin!)
Anyway, the very best of luck Steven,
Joe
Thanks for info Evelyn We are praying for you all. Please God all will go well tomorrow, Have forwarded details to family. Love to you all
Auntie mae xxx xxx
You're a brave young man Steve; thanks to your parents Evelyn & Matthew for keeping in touch and we wish you good luck and full recovery. Hope you'll visit when you get back to Manchester
Don & Jane Muir
Full of admiration for this brave family. Much to learn from your positive approach and strangth. Wishing Steven a quick recovery.
Very Best Wishes
Mehtab
The best of luck with everything and wish Steven a very speedy recovery and hope he'll be back on his feet in no time!
Stéphanie
Steven has the best possible support from a family with such a positive atitude.
Jean-Pierre
Hi Evelyn, Matthew, Steven and Fergal. Thinking of you all especially Steven, hope all goes well, we will keep in touch.
Lots of Love,
Laura, Margaret, David, Laura Cody and Baby Eve x x x x
Hi Evelyn, Matthew, Steven and Fergal. It is wonderful to be kept informed of progress in this way especially being so far away. Our love and prayers are with you all at this very difficult time. Best of luck with everything and your attitude Steven is an inspiration to all. Love Angela & Harry xx
Keeping all of you in our thoughts and prayers. thanks for the web site helps keep in touch. Our Ronan was through something simular years ago, look at him now world tour and living with his travelling companion in his seaside villa!
Wishing you all the Best
Very best of luck to you steve and family.. Our thoughts are with you all .
Best wishes from Mick, Maire, Ciara, Aoife and the twins (Ellen rose and Aisling) in Dublin
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