Dear everyone,
Today has been just so relaxing, it's been great. No galloping to and fro to the hospital!
I know that you'll all be delighted to hear that Steven is feeling really good at the moment. I see improvement even since yesterday. He is moving around very well and seems to have greater mobility now in his back. While in the hospital, he seemed quite stiffened with pain and every movement caused some discomfort, despite the variety of painkillers administered. Of course, he is still taking about three different anti-pain meds during the day, but they are not as strong as the ones used in the hospital. There is still discomfort but not to any degree that's debilitating.
I don't recall if I mentioned this previously, but corticosteroids really increase the appetite for food. Steven could literally eat all day long and has been lucky enough to never really have suffered nausea throughout this lengthy process. Consequently, another plus point in being at home is the constant availability of good food and tasty snacks. After weighing himself this morning, he discovered he was 76kg. This is the heaviest he's ever been in his life! Judging by his facial expression, we didn't know whether to congratulate or commiserate! (In all, a good thing, I feel.) It is also so much easier to balance the sugar/insulin intake at home – his glycemia always seems to go off the rails in hospital, possibly due to the scant nature and awful taste of hospital food.
At the moment, Steven is online on his laptop with music playing in the background – beautifully banal, thank goodness. The nurse has just been, done the drip (aka perfusion/ Christmas tree) and left. Matthew is cooking chicken Marbella for dinner, which is one of Steven's favourite dishes and there is a Liverpool football match online later on. Steven will be glued to that, for sure.
That's all for the moment.
Love as always,
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:
Wonderful news! I can just picture the tranquility of the scene and smell the chicken marbella. So good for you all to get a break after the last few weeks. Don't worry Steven about the weight - you're still not as heavy as me and anyway - always good to have some reserves for your rigorous exercise regime! Love to you all
Marian, Michael, Nora and Joanna xx
Ah yes the chicken marbella - I can thankfully now picture you all at the apt again. I am just so delighted that you are back in situ Steve and the awfulness of your extreme back pain has lessened. To much better days and keep eating it all helps. With much love to you and of course the chef(s) de jour
Aideenxxx
There's No Place Like Home and Steven you are showing this to be a fact. It was wonderful to read tonights comments. Oh to be 76kg. I would be floating around the place...... Your Marbella sounds good, Matthew Men seem to be taking over the kitchens and I for one do not mind in the least. I prefer the washing up. Enjoy this new state of things. You all need to recover from the recent ordeal. God bless and love
from
Auntie Mae and family xxx xxx
Only 9 days left till the big test!!
xxx
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