Dear everyone,
It would seem quite ridiculous that one's degree of calm and happiness should be so strongly affected by the readings of a thermometer. In out home, the correlation between the two is mighty.
Steven was up early this morning in readiness for the HAD arrival. I noticed immediately that he was looking quite flushed. When asked how he felt, the response was that he had a bit of a temperature of 37.7 (the upper ceiling of the normal range being 37.5). Trying to control feelings of alarm, we decided that this was probably nothing to worry about. We would wait for the lunchtime temperature check to verify the reading. The nurse arrived and left, all the while being quite vocal in her view that Urgences should be called immediately. Naturally, this was a situation we didn't want to rush into again as, for sure, he would end up re-hospitalised for monitoring purposes. What to do? We were comforted by the fact that during the last two weeks in hospital, Steven's temperature did jump into the high 37s on at least two occasions, but nothing came of it as it promptly descended. We decided to remain put.
By early afternoon, the temp had decreased to 37.5, and by this evening 37.4. The nurses this evening were satisfied that everything was fine. Relief all round! The worrying thing is that the pain in his back was stronger today and his current medication is now only barely coping. Steven also slept a full five hours throughout the day, which he obviously needed.
Tomorrow, Steven has a midday visit from the physiotherapist. Ideally, this should help the back problem. The HAD nurses will also do a blood draw in order to do a complete blood count in preparation for Steven's appointment at the hôpital de jour which is scheduled for Friday morning at 8:30.
Hopefully, today's temperature high was no more than a glitch and tomorrow holds a better pain-free day in store for Steve.
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.
2 comments:
Tomorrow is another day and God willing it will be a trouble free one. At this moment it is stair-rodding rain and it is not likely to let up for some while. We have to expect this from now on I guess. Love to you all
from Auntie Mae & family xxx xxx
Dear All,
We just pray for a temperature-free day today. Good luck with the Hôpital du Jour.
Lots of love,
Cristina and Bert
Post a Comment