Dear everyone,
Today has been has been a day of doctors’ visits. Anna and co. were in this morning to do the daily physical check up and record how things are going. This afternoon, we had Socié, de Latour and a gaggle of internes call by. Socié feels that there has been improvement but that the situation is still very serious. He pointed out that the stomach paralyisis that Steven is currently experiencing is well evidenced in post transplant GVHD in the Fanconi anaemia population. Steven’s bilruben levels have risen and he is also concerned that GVHD might be increasing in the liver – Steven has always had only a minimal trace of liver GVHD previously.
Matthew and I made an appointment with Dr. de Latour this evening, who is always so clear and informative. He feels that it will take another week until we can judge whether the present treatment is being truly effective. If there hasn’t been significant improvement by then, they will change the treatment and try another approach. He also signaled that Steven will need to remain in hospital for at least another month, until they are confident that his condition is under control. During the course of the conversation, he casually mentioned that Prof. Socié is an internationally recognized expert in the study and treatment of GVHD – so, I guess we’re in the right hands!
Steven was in okay form today. The prednisone steroid medication he is taking in an enormous dosage can take its toll on the mood and personality. Combine this with the increased amounts of morphine being consumed for the still very painful back problem, and now tummy cramps, and all the other varied strong medicaments, and you have a veritable cauldron of mind altering substances. While I wouldn’t say he is in bad form, he does seem to have lost the energy to interest himself in most of his usual diversions in this reduced hospital environment. He has abandoned the computer, playstation, and will only occasionally watch the news. That’s not to say he doesn’t put forward his best effort into getting better. He follows all recommendations thoroughly and always does a little exercise even if it is the last thing he feels like doing.
The other news is that strike action is all set to tie Paris up in knots again, from tomorrow. This time it is more widespread and will last for an indefinite period. Luckily we’re not dependent on public transport any more.
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:
It is not great news, is it? However the big thing here is that Dr deLatour is so involved and he is so good at explaining things to you. I gather he does not dress up what he is telling you. Neither is he telling you what you would wish to hear. This is so important, isn't it!? That you and Matthew can feel you can trust this man, that you have faith in him and also that he can trust you to hear what he is saying. All we can do is continue to pray for you all. Please God! Please listen to our prayers.
Love you all
Auntie Mae and family xxx xxx
Please give our love and best wishes to Steven. We are thinking about him every day and willing him to turn that corner.
You are all in our prayers.
The Sheffields.
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