Dear all,
Today, Steven has continued to be alert and moving well, with naps in between. He returned to using his PS3, which was the first time since last Thursday – and also spent time on the computer which is pretty much a mainstay. He has a webcam on the computer which has been great as it means he can see certain people while he is chatting with them.
His temperature remains high (nearly 40˚ at times), as a result of which he did have a shivering episode with heart palpitations this afternoon. Thankfully, that was very shortlived and didn't recur. Naturally, they are monitoring closely and feel confident they will have this under control by tomorrow.
Steven's appetite hasn't been the same since Thursday's transplant and this evening he felt rather ill having eaten his dinner. Normally, at this point post transplant the long term effects of the chemotherapy begin to take their toll. Chemotherapy destroys all kinds of cells, particularly those that are most susceptible – specifically those that line inside the mouth, the oesophagus and throughout the gastro-intestinal tract. The outcome of this is a very sore mouth and an inability to keep food in the stomach for very long. Not all patients get this, but the vast majority do, to varying degrees. This is, most likely, the start of this difficult phase for Steven as he has already developed a small mouth ulcer. This inflammation, or mucousitis as it is called, normally does not really heal until the white blood cells are created and begin their repair job. Roll on those white cells!
Prof. Socié saw Steven this morning and told him he was not at all worried about him and felt things are going well. Steve will see Dr. de Latour tomorrow morning.
That's about it for today's summary.
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.
4 comments:
Hey Steve
Have been thinking of you through this process from Portugal - while I never doubted your reserve, strength or spirit this takes you to a whole new level - you really are something! As you enter day 5 sending you lots of love and
sunshine as you continue to get through these very difficult days.
With much love to you and as always to Evelyn, Matthew and Feargal.
Aideen xxxx
my name is denise and i am a friend steves aunt ann power in waterford i find it most interesting to follow steves steady progress through this difficult time and would like to wish steve and all his family the best.denise hughesxxxx
Evelyn, the up-dates are great -they fill in the gaps after asking Ellen - many times per day - for the latest on how Steven is! And all this through French - not so easy, surely, when it comes to the technical stuff! Bon courage to all of you. Steven, you are never far from our minds.
From a thundery Monday in Brussels..
Máire x
Hi Steve,
They always say that when the going gets tough the tough get going and you are sure living up to that. We art all keeping up to date with the website and thinking of you. Just keep the chin up and maintain your positive outlook as that will, undoubtedly, aid the healing process.
Again, we are all thinking of and praying for your spedy recouvery at 160 Viewmount.
Love fro all,
Michael, Maureen, Maryse, Ronan, Frances, David and baby Nathan
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