Dear everyone,
Friday already! I don't know where this week went, but we seemed to have moved from Monday to Friday very quickly. I'm not sure Steven would see it this way.
Sandrine was back from her summer holidays today. It's always nice to have her on duty as she is always bright and cheerful. The nurses here seem to do twelve hour shifts over three consecutive days and then are off for the rest of the week. They do try to allocate the same nurse to each patient as much as possible, which is nice.
It was announced this morning that they were going to go ahead with the central line change. De Latour explained that they were finding it difficult to kill off the bacteria in the line and that it was better to remove it as a precautionary measure. The danger was always that it might find its way into the blood. This meant a trip to the operating theatre this afternoon. Steven is a little sore this evening as the local anaesthetic wears off. The plan is to reinsert a new line on Monday or Tuesday. This entails taking a 30cm line in through the jugular vein just under the collar bone and out through the chest where the line surfaces. It's not a dangerous procedure, just invasive, and it takes time to heal.
The white cells today were 3,900. Steven still has a lot of discomfort in his legs which he now describes as muscle spasms. De Latour continues to feel that everything is going very well and he is not worried about the balance of medications nor the control of their side effects. The result of the chimera test should be with us by Monday.
Thanks for the update on the kennel situation, Ellen. I just wonder, at this point, how many dogs Peter keeps in his 'living room' - or is this just a euphemism for 'big shed'? I also notice he has new doggy pictures adorning his website, featuring Sam. Hopefully this is the beginning of a beautiful relationship between Archie and Sam!
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:
The weeks are flying by for us all. Just think we are more than half way through July and we don't feel we have had any Summer. Hope the Doorley family have some decent weather for their holidays. We are still trying to pack for Cyprus and find homes for unwanted goods. Poor Steven you must be fed up off all that is happening to you. I know! It will all be very worthwhile very soon DV. How do you put down your time Evelyn? You are a really wonderful lady and you are wonderful parents.
Before I get maudling I will say Good Night, God Bless and love
from
Auntie Mae and family xxx xxxx
Hey,
Just a small note to say I hope Steve recovers fast, best wishes from me and all the Moller-Nielsen family (Klaus, Caroline, Jamie, Tom & Mark). Get well soon!
Jamie
We are continuing to follow your progress with interest and even though there appears to be a new problem daily, it’s brilliant to see that things are progressing in line with the doctor's expectations. We hope things continue to improve. We were just down at the parade as it’s the Belgian national day and for a change, it’s not raining. We might stay up to see the fireworks later. All the best.
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