Dear all,
I spent the afternoon with Steven. Dr. Nguyen arrived at about threeish to provide us with an update of the general medical opinion.
They have found nothing. The fibre-oscopy was fine and the cardiac ultrasound was completely normal. As Nguyen explained – there is no point in keeping Steven in hospital to watch him heat up and cool down in accordance with these lonesome temperature spikes, so they plan to release him, possibly tomorrow or Thursday. The PCR infection markers in his blood have halved (without antibiotic intervention) and this is also a really good sign.
In the meantime, Steven’s throat feels sore and it looks like the herpes is again on the rise. They took swabs this afternoon to investigate. I think this may mean he goes back on the Foscavir, which is awfully unpleasant but can at least be delivered at home.
We need to wait and see tomorrow what the final story is. All decisions need to be shared and corroborated by haematology, but I don’t think this will be a problem. Steven is nervous that, once at home, he will get another temperature within a really short period, which would undoubtedly dictate re-admittance with the whole investigatory process again kick-started. This notion is a bit daunting and I fully understand his point of view, but he is better off at home even for a 24 hour break rather than languishing in the hospital bed. We need to take confidence and banish these demons of doubt that at times have the ability to hover dangerously!
We are hoping for no last minute snags and that by the next posting he will be already at home and taking a really long breather from the hospital environment.
More tomorrow,
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:
Hi Steven,
Just a quick hello from the Mackintosh gang and fingers crossed that you get a break from hospital asap - I'm sure you're looking forward to seeing the new apt in the swanky end of Paris before you move again! Homework's done here for today and Nora and Joanna are watching a bit of The Sound of Music - nostalgia for last year's Austrian holiday I think. Weather is lovely here so we've been out and about a lot, enjoying the leaves and planning scary outfits for Halloween - no shortage of fireworks already! Love to you Evelyn and Matt too and thanks as always for keeping us up to date so clearly. All the very best for now, Marian, Michael, Nora and Joanna xxxx
Oh I am heaving a sigh of relief again. Last night I was very anxious at the situation. I try to see a sort of pattern in all of this but as we are all newcomers to this condition we have to be careful not to get euphoric or too despondent. I hope you get home sooner rather than later and yes it will be nice to see another part of Paris. This is the 111th day and you have come through a lot. Our weather is a mixed lot. No dining in the garden today but it was fine almost all day. It was a very sad, grey sky though and definitely warm clothes needed. The year is going by very quickly. Norah and Joanna will be busy preparing for Hallowe'en. They really enter into the spirit of the occasion. Pauline will have a special Show with her Club members so we will go along to that DV. She is also preparing an event for The Children in Need Fund raising event on the 16th Nov. Our Church is preparing for our PPs 25th Anniversary of his ordination on the 30th Nov. That involves the Literature, Music and the catering afterwards. We might have moved to Cyprus if this event was not on but as Joe and I say We have shared almost 15 years of Fr Doug's Ministry we may as well celebrate this big milestone. Last year he celebrated his 50th birthday. The bishop is attending as well as a lot of priests who were ordained around the same time. His family will come from Ireland, "our" friends in Ghana will be represented so it is going to be a great occasion. We as a parish have a lot of projects in Ghana financed by us.
Right Steven. I will go away now and pray for you and a hopeful tomorrow and a more even time ahead. Our love to you and family.
from Auntie Mae and family xxx xxx xxx
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