Dear everyone,
All continues in a very positive light for Steven at St. Louis. Matthew and I spent the morning with him and he was in very good form indeed. The soreness in his throat and chest is improving daily and his appetite seems to be returning. He had soup, two slices of bread, yoghurt, pineapple compote and banana for lunch, and requested pasta bolognese for dinner. This is the first time he is eating such solids and in such volume since the day of the transplant. He has also been using the PS3 yesterday and today which also indicates a return to previous form.
The doctors have discovered from the cultures that he did indeed have a virus in his lungs. They have said that no concern is necessary as they have the matter in hand, with a further change in antibiotics, and treatment is well underway.
Ellen spent the entire afternoon and wouldn't be prised away when we returned at 6pm, armed with hot dinner, to check on things and say hi. They have been supplied with several DVDs to keep them amused this evening and seemed very content when we left.
I have saved the best news until last. Virginie, who was Steven's nurse today, arrived around lunchtime and said, "J'ai des resultats pour toi, Steven!" (I have some results for you Steven.) Apparently, STEVEN NOW HAS 400 WHITE BLOOD CELLS!!!! However, extreme excitement really needs to be tempered as we have been warned that, at the beginning, counts can rise only to plummet again. They will need to see a consistent upward trend over several blood counts before they are convinced. However, they do believe it is positive. To use Socié's words, "something is happening". Dr. de Latour is also pleased but stresses that they will continue to treat Steven as if he has zero white cells for the moment.
Thanks once again for all the wonderful support. We are glad to be able to share good tidings with you all.
Love,
Evelyn, Matthew, Steven and Ellen
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.
5 comments:
What wonderful news. I cannot tell you how happy we are with tonights news. Actually I am in floods of tears but they are tears of hope, happiness and a release of emotions. Reading the many blogs have been a source of comfort to us so we feel they must have brought you all a great feelinf of love, hope and indeed compassion. You have been on a dreadful journey and it is not over yet. There is now so much hope to cling to. Prayers and Masses have been offered for you all as you know. God bless those wonderful people who were able to make this treatment possible, God bless the sources of the stem cells. God bless all who were able to use todays technology to bring us all closer, to share your sufferings and your happiness. Evelyn you have no idea how much your web site is appreciated. I must away and say my Thanks to God . Love you all. We are with you in Spirit
From Auntie Mae, Joe and everyone here. xxx xxx xxx
Dear Evelyn, Matthew, Steven and Feargal,
This is very encouraging news indeed. Hang on in there, Steven, and get those white blood cell counts flowing !
Love to you all
The Sheffields
White blood cells...way to go Steve...there are also tears here! Hi to Ellen, great she was with you and Evelyn and Matthew to share fab news. I know all responses must be tempered with some caution, however I really like Socie's ' something is happening'! Just brilliant news.
Love to you all
Aideen xxxx
"Go forth 400 and mulitply" RESULT !!!!!!
Tina ( Dublin)
Fantastic stevo!! Keep up the hard work cous, glad to hear your back play the PS3!!!.
Were all thinking of you !
Niamh and aoife and all the keys family
xxxxxx
Post a Comment