There is nothing really new to report from today's happenings. It's been a fairly run of the mill type day. I guess that in itself should be appreciated – 'no news is good news' as the saying goes. The whole approach now is one of monitoring the existing situation and trying to avoid the development of any further complications. This is a complex task.
To begin with, Steven's white cells reached 4,500, which is into the normal range – yeah! There is really no point in quoting either his haemoglobin or his platelet (blood clotting factor) count as he has had transfusions of both these blood products very recently, so both will be quite high as a result. We have not yet received the result of the test for blood cell chimerism – this may arrive over the weekend.
Today he was taken off the cyclosporine (immunosuppressant) as this was the instigator of his leg pains, kidney insufficiency and high blood pressure. To compensate for its removal, his intake of corticosteroids has been increased. However, this creates its own problems as these added steroids will further impact his liver enzymes and high blood sugar. It has all become a very delicate balancing act. As you may know, since his transplant, Steven's blood pressure and blood sugar have been entirely controlled by medication, at a fairly high dosage level. I never cease to be amazed at the amount of strong drugs the body can absorb simultaneously and appear to tolerate. The variety of antibiotics alone is extensive – being pumped in every day, around the clock. It would seem to be an impossible feat of endurance.
Steve's hands are redder than ever and the doctorly debate over the degree of redness continues. My impression is that the cortisone cream has only agitated the existing problem. I really don't see the redness as a skin rash, it's really more of a redness that lies under the skin and is not superficial in any way. I can't really see how cortisone cream would help, but I suppose they know what they're doing.
Anyway, tomorrow is another day and hopefully another step along the road to recovery.
With love,
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:
Hi Evelyn/Matthew,
Having known Steven for roughly 18 years now, can I just say that I have never (repeat, never) seen the man on an exercise bike. This procedure appears to have worked absolute miracles already. Good stuff!
Keeping in touch on Facebook as ever.
Nick
Hi Evelyn! Just wanted to tell you that Peter came over today to collect Archie as we're all off to Ireland tomorrow! He was very excited to hear that we knew 'Sam the Golden retriever.' He said that Sam is very happy and keeping well! Archie will be staying in the house too so hopefully they'll become best friends!!
Also, I booked my tickets for Paris which I'm sure Steve already told you.. I'll be there on the 1st.
Looking forward to seeing you both,
Ellen xxx
Thanks again for the latest reports, Evelyn. So many positives have happened in the recent weeks it must mean a lot of right things are taking place. Hope Ellen has a happy time in Ireland. Feargal I apologise for seeming to spell your name incorrectly. My fingers were too weak to press the key... Hope your leg is improving.
Love to you all
from
Auntie Mae, Joe and family xxx xxx
Hi Steven
I'm really glad you liked our cards. This week we're having our 'Doorley' summer camp and we went to the zoo with my friend Ayo. It rained all the time but we loved the new baby elephant. Then we went on the Viking splash tour of Dublin and the driver said he was a maniac and for a fact, he was! We went into the water at Canal basin and saw Bono's studios and then there was a storm and we saw forked lightning. We all got a bit hysterical, especially Joanna! We wore Viking hats and roared at passers by every so often. Joanna wants to tell you that we went to the Aquarium in Bray on Monday and loved the Octopus. Get well soon. Lots and lots of love for now from Nora and Joanna ps we're off to Cork on our holidays tomorrow
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