Dear all,
Dr. de Latour did the rounds with Anna this morning. It seems like the handover between the two is still ongoing. He feels that things are going ‘okayish’ at the moment. He reiterated that they are sure it is GVHD but they are not wholly confident that the stomach bleeding is a result of this, or just some trauma caused by the nasogastric tube, or indeed a combination of the two. However, the tube needs to stay put until they are convinced the stomach is fully functioning.
It was also strongly recommended today that Steven needs to challenge himself in terms of physical activity. As a result, Matthew and Steven made a foray into the corridor, late morning. Steven did a full round of the corridor rolling a wheelchair in front of him to provide some balance. (You need to understand that one week ago Steven could not get out of bed by himself, or take his weight on his feet.) After the corridor tour, Steven was totally exhausted and needed a nap. This GVHD mercilessly knocks every ounce of vitality out of a body and is much worse than the direct aftermath of the transplant itself. Steven has said that he has never felt so ill at any time in the past. This afternoon, he also actually spent five minutes on the exercise bike. Again, this was a bit of a trial, but every little activity will help to build strength.
I will leave it at that for tonight.
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.
3 comments:
Dear Evelyn, Matthew and Steven,
This still looks like advancement. Besitos,
Cristina and Bert
Any step forward is great news. Keep positive Steven. You will win this battle and all the ones ahead of you. We all wish we could do something more for you but we are sending our thoughts and prayers to you. You are bound to feel down and frustrated but you have done very well so far. Good night and God bless you
Love from
Auntie Mae and family xxx xxx
Dear All,
Our thoughts are with you all.
Steve: Keep on fighting to build your strength! You can do it!!
Hugs,
Mahesh and Yovina
Post a Comment