Dear everyone,
All continues to be stable with Steven at the moment. He had a few rounds of doctors’ visits today. While they are all satisfied that there is nothing to be excessively worried about, there are still some outstanding problems with both the pneumonia and the herpes which resulted in their decision to retain him in the hospital for a further period of time.
They need to continue with the antibiotics for the pneumonia infection for several more days. As the herpes now appears to be of more concern, they have changed his medication from Zovirax to Foscavir – we believe this is the same drug which resolved his lung herpes when he was in Trèfle. Hopefully, it will achieve the same success this time round. As this treatment needs to be delivered intravenously, at least initially, this was the primary rationale for Steven’s retention in the hospital.
There is still considerable back pain, and the dosage of painkillers to counteract this is still quite high. The doctors believe this to be a consequence of the combination of pneumonia and a stressed back posture – Steven has always had difficulties with his back as a result of childhood scoliosis: swelling resulting from the high steroid intake has not helped this at all!
Judging by his mood, Steven is feeling a little ‘down’ today and more than frustrated. He is desperately anxious to get out of hospital – who can blame him?
The good news is that his white cells are now circa 5,000, with neutrophils at around 4,000. His haemoglobin is steady at 8.6, and he will have a platelet transfusion later tonight. We were more than relieved to hear these results, as you can well imagine.
Ellen returned to Bruxelles yesterday evening and will depart for Liverpool tomorrow evening, where her Zoology degree beckons. Feargal, on the other hand, returned to Manchester this evening to continue his studies in Sports Management. Such scholarship! Here’s wishing them both a great academic year and hopefully it won’t be too long before we see them again!
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:
Poor Steven. It must be so frustrating to get a taste of "home" and freedom and now be confined again. Keep thinking positively, darling. You will be home soon and this time hopefully they will have treated your various problems successfully. It must be just as frustrating for the people treating you. Our warmest wishes to you Ellen and Feargal for the year ahead. Blow kisses around Liverpool from me, Ellen. I lived there for a number of years and it is a great city. The people are unique. Tonight is decidedly COLD. We still manage to eat our lunch in the garden but we make sure we have a cardigan nearby... We even put the heating on for a short while.
Our parish is fund-raising to have our Church hall refurbished and on Wed we will have a Ploughman's Lunch with a raffle included. This is a big chance for me to offload some items as prizes. Hope the day is fine and warm enough to sit outdoors and chat. Surprisingly enough the previous effort was very well attended which gave us the courage to have another one.
Our daughter Julie has put an offer in to buy a house. She is renting since she separated from her husband Peter. Our grandson, Christopher, is pleased at the prospects of their own house. He feels very insecure in rented house. He is 14 years old. Actually has the honour of sharing his birthday with Tom (1st Jan.)
Will leave you in peace now. God bless you all and love
from Auntie Mae & all here xxx xxxx
Hi guys, just writing to say hello. Hope you havent been too dissapointed with the set back of returning to hospital steven. You are in my thoughts everyday and i have my little first years saying a prayer for you in class once a week. Sending love and hugs your way, Laura de Paor x x
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