Dear everyone,
Matthew and I arrived at the hospital just before 12:00 today. We had already decided that Steve's release would be unlikely to take place before this time as we know how busy it always is on Trèfle. We had his lunch in tow just in case. Just as well!
When we arrived into his room, Steven was looking far from joyous. We had just missed de Latour who had been in to state that Steven's herpes virus had reappeared: furthermore, he had developed cytomegalovirus and also a mild version of C difficile. All of this had been deduced from blood samples. Hardly good news. You can imagine how crestfallen all three of us were. There was to be a doctors' meeting around lunchtime where a decision would be made regarding what treatment would need to take place and whether his discharge needed to be postponed. They would report back at around 1:00-2:00pm. Another chest x ray was taken.
At 2:30pm, Matthew and I went in search of someone to find out what the story was. We met Julien, the interne who was on his way into Steve's room. He explained that the herpes virus is showing in Steven's blood but they are not sure of its location. His x ray was clear so it is no longer in his lung. The cytomegalovirus (akin to glandular fever) is apparently below the threshold level that would warrant serious concern and is generally common in post transplant patients. The team's perception is that the C difficile is also rather mild in Steven's case. Once again, we were assured that ''they have it all under control'' and that Steven was free to GO HOME….!!!
By 6:00pm, we were still sitting, by this time all packed up, with Steven once again attired in 'civvies' (which was just a great sight to behold) waiting. Trèfle 3 was just hopping with medical crises today. Julien kept popping his head around the door telling us he'd be with us ASAP, but things were very difficult in the unit.
Eventually, armed with a massive list of high dosage prescriptions, a maxi bumper box of surgical masks etc. etc., we finally sashayed down the corridor and out of the hospital to freedom – at least for the moment.
This has felt like one of the longest days ever in the hospital. Nearly as emotionally exhausting for all of us as the day of the transplant, but well worth it, because now we have Steven home with us.
Love to all,
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 Steve
Great to hear that you have been allowed home!
Looking forward to seeing you tomorrow!
Sion Millichip
Hope all is going well for you Steven. Will be praying for you all
Love from
Auntie Mae and family xxxxxxxx
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