Hello everyone,
Imagine our relief when we heard that the lung scan showed no sign of pneumonia. Alleluia! Steven had eventually been wheeled out of his 'bubble' at elevenish this morning, smothered in sterile gowns, mask, booties etc. While they had him out of the room, they decided to do a scan of his sinuses for good measure, in an effort to rule out any problem there. Back in his room, he had to wash himself from head to toe in iodine and have his central line completely cleaned and re-bandaged. Needless to say, he was exhausted after all of this and spent the remainder of the afternoon asleep.
Many doctors came and went today. Socié arrived at about 2:00 to declare that he was happy with the scan result and feels re-assured that the high temperature (still hovering above 38˚) is Steven's body's response to all of the highly toxic drugs that have been administered. The interne, Annalise (young, Italian, lovely, highly chatty) dropped in late afternoon. She reiterated to me (while Steven snoring heavily) everything about the scan findings and added that all the cultures they have done so far have been negative
Steven's condition today has been okay. His mouth is sorer than yesterday and he is having difficulty swallowing with his sore throat. He is now also on a painkiller for his stomach cramps. Despite all of this, he still managed to eat some minestrone soup and banana for lunch and half a lasagne followed by chocolate mousse (his choice) this evening. Miraculously it all stayed down!
It's been a long day.
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:
Reading your updates as they come in. Thank God all is so well. It is harrowing to realise what Steve is going through but you are all so brave. You are really an amazing family. We are thinking of you, praying for you and are joined by family, friendsand neighbours. Everyone is anxious for the latest news. Quite a few have your web site.
God bless and continue to give you the courage and strength you need.
Love from Auntie Mae, Joe and family
Just sending you all lots of love and light and concentrated healing energy to Steve. You are all doing so well and are the bravest people I know...you constantly amaze me. Much Love Tina ( Dublin) xxxx
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