Dear all,
We were too late returning from the hospital last night to find time to write a communication. As you are all probably aware, outside of emergencies, there are usually few developments over the weekend in St. Louis. As a result, normally, there is little to report.
Steven continues to suffer a lot of discomfort in the middle of his back. They seem to now have this under some control and have certainly reduced the intensity of pain. This has been achieved by administering a ‘lucky dip’ of various painkillers over the past 48 hours. They resorted to trying a morphine injection on Friday evening, as it had been such a difficult day for Steven – the first time I have ever heard him declare that he was feeling seriously ‘not well’. Of course, morphine does not agree with Steven and causes its own negative effect, so this was not really a viable solution, although it did mean he got to watch the rugby match in some degree of comfort.
Yesterday, Saturday, was better. He is now taking 3-4 different painkillers at various times and this seems to be working effectively for the moment. Steven was in much better form and seemed ‘more himself’, although mobility was still difficult. He had two visitors in the afternoon, which was really nice for him - Romain and Thomas are friends who were in the same residence as Steven, during his first year in Manchester.
Steven remains very agitated to return home by tomorrow and we see no reason why he shouldn’t as long as his temperature remains within the normal range and he has an appropriate pain control regime. Hopefully this plan will work out as, in many ways, he would be more comfortable at home. At the moment, he is getting no exercise in the hospital as he is not allowed outside his room: this is not helping his back muscles which are the source of his discomfort. He needs to get back to exercising and re-building the muscles all over his body as this is the ultimate solution to the pain issue.
I will update again as soon as there is further news.
Love,
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:
Oh Steven how good to know your pain and discomfort has been eased. Pain can really bring you down. Hopefully you will get discharge to home and you can relax a bit more. There is freaky weather in Britain including a number of places hit by a tornado. Whatever next!!!! Coming up to Harvest Thanks-giving time. Joe and I are planning out display for our Church. Another possible "lasts" for us. So many things are like that for us. We are planning a trip to Paphos to have a look at some properties. We may go in a couple of weeks time DV.
I hope you enjoyed your friends visit. I guess it was a yakkety time for all of you. Always lovely to catch up with friends.
Hope things get a bit more normal for you. God bless and tons of love
from
Auntie Mae, Joe and family xxx xxx xxx
Hi Steven,
Great to hear that you are out of the hospital at last and the best of luck to you now as you continue to recuperate. We had Angela with us here in Brussels for a week and she sends her best wishes to you all. Hope the French did not give you too much stick over the rugby result!
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