Dear everyone,
Steven and I have just returned from spending an impromptu afternoon at the hospital. As his platelets were 20,000 yesterday, they decided upon a transfusion today. At the minute, twice weekly seems to be the requirement for the said platelets, so this sets him up nicely for another session, come Friday's hôpital de jour.
Yesterday, Monday, was not a good day pain-wise. Steven spent the morning in bed, driven there by intense discomfort in his back. Matthew contacted Dr. Robin at St. Louis to explain that the latest adaptations to his regimen (ie. courtesy of Dr. Rocha during Friday's clinic) were not really working and the pain was again on the increase. She felt that the only remaining effective drug that we could now resort to was morphine, in tablet form. Another overhaul of his burgeoning medicine cabinet followed - this time to include morphine and a muscle relaxant, while removing some other meds …… I tell you, this medication merry-go-round never stops!
The net effect of all of this is that Steven is now relatively pain free! It has not disappeared but it is hugely relieved. The really positive thing about the absence of pain is that it physically enables him to focus comfortably on increasing his physical activity level. It's quite a catch 22 situation when the pain level stymies attempts at exercise, yet exercise is the very thing that's needed to loosen the muscles and diminish the pain.
We spent a good deal of time with Dr. Robin and Julien (interne) today. Both feel that while it is unusual to need such strong pain relief for muscular problems, they are 100% convinced (following a detailed physical, testing his back bone, muscles and reflexes) that the pain is muscular in origin. They are completely satisfied that with the continuous tapering of the steroids, combined with a normal activity level, all will be well. Steven has been out walking twice today and spent a lot of time on his feet at the hospital, so, he has done very well.
A blood draw yesterday showed that the white cells have again bounced upwards to 3,500, with haemoglobin of 9.4. There are no further traces of herpes in the blood, just in his throat. Steven's temperature has been stable since last Wednesday. He has 95% chimerism for one of the cord bloods – we still don't know which one.
I would just like assure everyone that we are not too horrified to have to remain in Paris for a lengthier period. Paris is truly a beautiful city, although it is a pity that we are not experiencing it under more joyous circumstances. I can honestly say that while our life here is pared back to a most basic daily routine (ie. we are not out partying, dining and sightseeing) I really think it is a great place to live. Our apartment is very comfortable and we live in a multi-ethnic café society neighbourhood (large Jewish, Arab, African and oriental communities) which is always alive and bustling with activity. It is not hardship, by any means.
That's about all the news for the moment. Now, I simply must go and practise my 'soixante dixes' and 'quatre vingt dixes' ……. you are truly lost without them in Paris!
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.
4 comments:
Today has been wonderful. The sun shone, the temp was very comfortable, we could eat lunch in the garden and the birds were singing their little hearts out. Joe got some work done and I got a large washing almost dry. Poor Steven! Pain is so awful especially when it is persistant. Perhaps this latest regime will benefit you for awhile. At least you can increase your much needed physical activities.. Haemoglobin of 9.4 sounds good to me. I haven't had a blood test for awhile but I doubt if it is much higher.. I loved reading your account of life in Paris. I have never been there but have often wanted to go even for a weekend. In time you will all be able to experience the real delights etc of Paris or will want to come back there one day. You are probably lucky to be living where you are and can experience the interesting ethnic societies near you. It is good to know you are happy with your present situation . You are always in our thoughts and prayers. Our love to you all
from
Auntie Mae and family xxx xxx xx
Hello Steve’s family,
My name is Giulio Martini and I studied with Steve in Brussels. Mahesh told me that he was ill and just checked on his progression. I am an osteopath and thought it may be worth visiting an osteopath in Paris, in order to reduce Steve’s painful symptoms. There is a very gentle and well known osteopath in Paris called Paul Chauffour. He uses a very soft and safe approach to treating muscular pain and also allowing the health of the body to increase. If he believes that there is any risk in his treatment he will not precede. This may be an alternative or a good compliment to all the pain killers he is taking.
Well I hope this is of help, please let Steve know that we are keeping him in our prayers and if you need to contact me my email is gjmartiniosteopath@hotmail.co.uk I am currently practicing in the UK but know many osteopaths in France and Belgium.
Giulio
Dear Evelyn, Matthew, Steven and Feargal,
This is just to say that we are still closely following your updates and thinking of you throughout the ups and downs. We send you our love and best wishes, and hope that solid stability will start to set in very soon. You're a very brave lad, Steven - hang on in there, we're all with you on this !
The Sheffields.
Hi Steven
Hope things are improving for you - had to drop a note seeing as it’s day 100. Hopefully you’ll be able to enjoy another good weekend for sport – and this time without the discomfort of watching Ireland struggle! I’m sure you weren’t too happy either with Liverpool the other night – as Benitez said, possible their worst display since he took over! Anyway no doubt they’ll bounce back.
All the best
Joe
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