Dear everyone,
Apart from having to endure the dreadful tedium of everyday hospital life, all is well with Steven. He was in slightly better form today and still has his sights firmly set on his exit date from Coquelicot.
Matthew and I bumped into Dr. Nguyen this afternoon. She is so pleasant and just wonderfully informative in all her interactions. She expressed the opinion that they are quite happy with how the pneumonia is being resolved, and that they need a few more days of administering antibiotics to be sure of really clearing things up. The decisions regarding the herpes treatment comes directly from the Trèfle 3 team and they are waiting on results to assure them that the new medication (Foscavir) is working.
It was also explained that once Steven is released home, his treatment will be administered and monitored, at home, within a scheme they call ‘hôpital à domicile’ (HAD for short) – this literally means ‘hospital at home’. Apparently there is a team of nurses that operate directly out of St. Louis, who do home visits, and continue the treatment on the same basis as in the hospital – with drips, monitors etc. The plan is that this squad will attend Steven at home 2-3 times daily to deliver his treatment programme. That should be interesting!! They are hoping to have this set up before the weekend, but cannot be certain as this takes serious coordination, as you can imagine.
Steven continues to have a lot of severe back pain, which concerns us a lot as this now seems to require round the clock painkillers. He tends to under-report his symptoms to avoid staying ‘inside’ longer than necessary. A delicate situation!
That’s the news bulletin from Paris for today.
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.
1 comment:
Hello Steven. It is good to hear you may be home soon again. It is understandable that you do not enjoy being an in-patient but it may actually work For you if you let the team know exactly how much pain you are in. When you are in severe pain you are aggravating the areas affected if you do not get the pain relieved. I had to learn this lesson because I am the worlds worst for taking medication. However when the Dr explained things I did realise there was a purpose in the treatment. The result was I did get relief, the surrounding areas became less aggravated and I was able to get back to taking treatment only when necessary. Trust the team, Steven. They are just as anxious for you to be at home as you are. Excuse the pun but it is a pain having to go through all this but think of the rewards.
God bless you and your family.
Much love
from
Auntie Mae, Joe and family xxx xxx
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