Hello everyone,
Today has been rather quiet, with no really new developments to report. We get the feeling that this has now become a real waiting game and that patience is possibly our greatest ally at this moment in time. We are still awaiting further news regarding the central line infection which is still closed off and fed with antibiotics daily. The interne, this morning, seemed unconcerned about this particular problem but mentioned that, at this point, they would like to see some platelet activity in the bone marrow. Steven is still finding it very hard to hang onto the haemoglobin and platelets received during his many and frequent transfusions.
Yannick was in action today. He always creates a bit of a stir and some added amusement. He pointed out that the high blood sugar and blood pressure are now becoming more stabilised and that this is further good news for Steven's prospective release next week. Of course, by this afternoon, Yannick was sporting an injury (oops!) and a major bandage on his left hand and had confided to Steven that he was having a bad day!
Matthew and I bumped into Sociè this evening, on his way home. When asked about his holiday, his answer was brief - ''too short''. He didn't seem the happiest of campers! I can fully understand as his job must be highly stressful. He did say that Steven is doing very well and that he will be in and out over the weekend as he is on duty.
Steven was in good form today (largely thanks to Ellen) but a little tired, especially by this evening.
More news tomorrow,
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.
3 comments:
Thanks for latest news. Hit problems with blog last night. Hope it is ok now. I won't take up your time tonight as you must be very weary and you need to relax. Hoping and praying all gets better each day.
Lots of love to you all
from
Auntie Mae and family xxx xxx
Dear All,
Do you hear Bert and me shouting from Brussels?
"Up, up, platelets! Up, up, platelets"
We're eager to hear good news from those ones there, Steve. Keep up the good work.
Lots of love,
Bert and Cristina
Hi,
Got a chance to catch up on the Blog this evening as we are only just back from Ireland. Sad news for us that Mum passed away but good news for Steven that things are going so well. Great to hear that you are out of the hospital so soon!
All the best
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