Dear everyone,
Sorry for the delay in getting back to the old blog, but there has been nothing major to really report over the past week. In this case, no news has been good news, really.
Feargal spent most of this week with us, returning to Brussels this evening. Despite spending a summer as the singular caretaker of our swimming pool, his labour has not really been duly rewarded as this has been possibly the worst summer ever for getting quality swim time due to the poor weather. Not much luck for Feargal and his buddies this year, in that respect! When home, he will cover it up until next year – a definite signal that the summer season has ended. Here in Paris, the leaves are already falling off the trees. I can't honestly say that the somewhat dreary weather of this seemingly very short summer has made much of a difference to us. So much time has been spent in the hospital and, since Steven has been home, he finds it uncomfortable to be in strong sunlight; in fact, he has been advised to shun it as skin is extra senstitive and super vulnerable to the sun's rays, post transplant.
Wednesday's hôpital du jour was pretty much as usual. Everything appeared to be in good order with Steven. They have discovered that the infection in his central line is localised as opposed to systemic; so it has neither spread from nor throughout the rest of his body. This infection is different to the one he had previously and has been identified as enterococcus faecalis, which is a common infection for wounds. We now have a nurse attending Steven everyday at home to clean and change the dressing and inject vancomycin (antibiotic) into his line. She arrives every evening wearing a crash helmet, as the motor bike is her preferred means of transport (very practical in Parisian traffic), and is quite a character.
We also have two physiotherapists who arrive twice weekly to deliver a physical exercise regime. At this point, Steven suffers from chronic back ache (from the steroids and resulting Cushing syndrome) and still gets very tired, very easily. Although this is 'par for the course', we all felt it important that someone knowledgeable should oversee his fitness plan. He has overdone it a couple of times and has been quite sore and exhausted as a result.
Steven has another appointment in the hospital tomorrow (Friday) for a further blood draw. It is expected that he will need platelets, although he did already have a transfusion during Wednesday's visit.
Outside of all the medical tribulations, Steven remains in good form. He eats enough to fuel a small family, and is now gaining a little weight. He looks quite plump and rounded (very uncharacteristic for him), but this is largely a result of steroid swelling and not true weight.
Well, Paris is full of news of the world cup in rugby to be held on French turf. It really is a popular sport here and they take it very seriously. We must have seen that punch to Brian O'Driscoll's nose about a thousand times now, in slow motion, and from every angle. The Irish team seem to have arrived today with O'Driscoll sporting a red beret – I guess in honour of the host nation. It should all make for some good spectating.
My niece Aideen, arrives Saturday morning for another visit. Instant entertainment is at hand!
With love from all of us to all of you,
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.
2 comments:
Hello everyone again. How nice to have had Feargal home for the short while. It has been a poor Summer for most of us really. At the moment the temp is between 20c and 24c but there is not a lot of sun. I have kept my tan fairly topped up. I am still sorting out what we need to take with us, what we might take and the def. not taking. Good old infection to get localised!!! Poor Steven I sympathise with your back ache. Pain of any kind can get you down over a period of time. I am not surprised to hear you overdid the exercise at times. It is so hard to know when enough is enough and one tends to push a little further......
Have a good weekend and the family join me in sending best wishes and love
Auntie Mae xxx xxx
Hi there
Nearly 75 days! Hope you’re enjoying all the sport – not that ‘enjoy’ would be the word to use for the last 10 minutes of Ireland’s draw against Slovakia! I’d say the mood is still one of shock in France after Friday – normally it’s good to see a country like Argentina doing well but it’s not really good that this is all happening in Ireland’s group! Weather here great by the way the last couple of weeks (almost too warm, but I’m not going to get any sympathy if I whinge about that). Pity about the disappointing swimming season at the pool in Brussels!
All the best
Joe
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