Dear Everyone,
Today has been very, very long and intense to say the least.
The first cord blood arrived a little before 11:30am - sooner than had been expected. A tiny packet (100mls) of bright red blood that was transfused into Steven's central line within about 15 minutes. This cord blood came from Holland from a baby born on 5th February, 2004. The second cord blood transfusion was underway by 3:30pm in the afternoon. This had come from the United States and the baby had been born on 1st October, 2002. It's almost unimaginable to think that, all going well, one of these sources of donor stem cells will one day make up 100% of Steven's blood cells.
It may surprise you to hear that Steven merrily snored his way through both procedures. He has been particularly exhausted today as he had virtually no sleep last night due to a malfunctioning monitor in his room which took ages to fix. He also is feeling quite uncomfortable with pains in his legs and discomfort in his stomach. The doctor feels this is one of the side effects of the cyclosporine (immunosuppressant) and painkillers have been prescribed.
This evening he has also been moved next door to a room which has been newly sterilised. All his belongings have also been removed and sterilised. The thick plastic curtains have been drawn around the bed, so he is now in almost total physical isolation.
We now enter into the really critical phase of this whole process. It takes an estimated 20 days for the cord blood stem cells to properly engraft in Steven's marrow and to start producing their own cells. A white blood cell count will be done everyday and we really need to see these cells as soon as possible. In the meantime, Steven will be at his most vulnerable for all types of infection, with little healing power in his own body.
Steven is forever the pragmatist and we have great faith in his resilience. At times today he looked like he was moving in slow motion, such was the level of his fatigue and discomfort. We expect that he may be spending a lot of time just resting and sleeping over the next days and weeks.
Evelyn, Matthew, Steven and Feargal
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:
Hi Evelyn Matthew Steve Fergal
Aideen just texted me the blog link. What an inspired idea well done! Thinking of you all at this time and sending you lots of love and support especially to Steve. The more I read the more I think he really is
" Superman"
Love
Tina (Dublin)
Dear Evelyn, Matthew and Steven,
"Bon courage" to you all. We are with you in mind and spirit.
Steven is a very brave lad.
Let's hope for an an absolutely optimal outcome.
The Sheffields
Dear Evelyn, Matthew, Steven and Feargal,
Stephen is a courageous lad. We are wishing you strength and courage.
Cristina and Bert
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