Dear all,
The temperature struggle continues. Upon waking this morning, Steven's temp was 38.3˚. By lunchtime, it was down to 37.7, then 37.5, but unfortunately this evening it has resurged to 38˚. Although both nurses today have been concerned, we have not rushed off to hospital. Dr. Robin had already advised us that unless Steven's temperature rose above 38.5, we could safely stay at home. She made this decision in light of their past struggles witnessing the feverish rises and falls and their inability to find a reasonable cause for these. They will be reluctant to admit him for further observation unless they have some other more specific symptoms to investigate. We have been warned to be vigilant for any new developments in this respect, but so far, there is nothing outside of the fever.
The added complication is that Matthew and I have contracted slight colds which started off with a sore throat. Neither of us ever get colds or flu - we might get a few mild symptoms which never amount to anything major. Under normal circumstances we wouldn't bother about a few sneezes, but with Steven's ultra low immunity, this has become a real worry. All the doctors and nurses know that we have colds and confirmed that all we can do is wear masks and keep our hands very sterile, which is exactly what we've been doing. It is possible, I suppose, that Steven might be beginning a cold, although he has no symptoms.
Tomorrow morning the HAD nurse will do a blood draw for lab analysis as it is expected that Steven will need platelets either tomorrow or Tuesday. In that event, he will have to attend the hôpital de jour for a few hours. So, by tomorrow we will probably have had some dialogue with haematology and they can confirm how to proceed. Hopefully we do not end up back in hospital! Hopefully the temp will remain below 38.5 for tonight at least!
On a different note, we have successfully moved into our new apartment. We were really only unpacked and properly organised by this evening as it took three car runs yesterday to get everything moved from the 16th to the 10th arrondissement. At this point, a large part of our luggage is medical equipment and boxes upon boxes of drugs, as you can imagine. Although less elegant, it's good to be back in this area which feels more like home turf. The fact that the hospital is so near and accessible is also soothing.
That about covers it for this weekend.
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.
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