Dear everyone,
Another weekend bites the dust in Trèfle 3. We feel that we are practically living here at this point. The walls, floors, machine bleeps, the peculiar medicinal smell that seems to be particular to haematology – all are now heavily ingrained in our consciousness. How I wish it were otherwise.
Steven was in a slightly better and more lively mood today - more talkative and slightly more energized. The NG tube is still in place and aspirating. There was yet another fuss about this, this morning, when they realised that it had been poorly inserted during the last procedure (only discovered after Steven had been sick to his stomach) and was not properly placed. This involved more rooting around until a correct placement within the stomach was achieved. One would think that for a patient in such a delicate condition they would really take care with such procedures – apparently not!
Today, Dr. Robin described Steven’s present medical status as extremely grave, which is pretty much in accordance with the medical opinion we were hearing all last week. (We try to get really regular updates as the situation is very dynamic and changes from hour to hour, literally.) She qualified this opinion by saying that things are also stable ‘at the moment’ – by this she means there has been no significant improvement or deterioration.
However, by late afternoon, long after Robin’s departure, Steven began to have difficulty breathing and has been on oxygen since then. The reason for this is retention of fluid in his lungs and throughout the rest of his body from all the intravenous hydration he receives. They are administering a diuretic to shift this fluid and ease up the extra pressure on the lungs. All very worrying.
Love to all,
Evelyn, Matthew and Steven
(Feargal returned to Manchester tonight!)
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.
1 comment:
Very worrying Evelyn but again it is a problem that is being dealt with. Thank God for the technology,etc available to help relieve the many situations. Yes it is traumatic and frustrating for all of you. It definitely does not help to find any measure of incompetence amongst any of the staff. Perhaps some members get a bit blase with "routine" procedures BUT I would not expect it in staff concerned with someone in Steven's condition. No improvement but please God no deterioration is a positive situation.
It must be hard on Feargal to return to Manchester but hopefully things will have become "improved" when he returns again. The weeks will fly by for him.
Good night to you all now and God bless and comfort you .
Our love
Auntie Mae and family xxx xxx xx
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