Dear everyone,
Today, Matthew and I spent part of the morning and early afternoon with Steven. Ellen then took over for the remainder of the day. He is now very alert, not doing the same amount of 'napping' as previously, and eating habits have almost returned to normal. This gives the impression that he is not as vulnerable as he has appeared over the past two weeks, although, of course, this is not the case. Maximum precautions still need to be taken regarding his isolation and the sterility of his environment, food, contact, treatment etc.
Amazingly, his white cell count zoomed up to 800 white cells today. This means the number has doubled in the space of 24 hours. Still it is early days, and we are being urged to be cautious and not overly optimistic. His throat and swallowing difficulty has now really improved, thank goodness. He is still being treated aggressively for his lung virus. Blood sugar was up and down today, mostly in response to the different medications administered variously throughout the day.
As the days go by here, one is increasingly a little more aware of the patients in the surrounding rooms. The four short corridors of Trèfle are arranged in quadrangular fashion around a central island which houses some of the administration and doctors'/nurses' facilities. The nature of this unit means that patients and their visitors need to remain inside the rooms; however, occasionally, some of the patients are seen to emerge. Usually they are on their way to 'scan central' downstairs or sometimes the more advanced post-transplant patients are being allowed out for a while. The majority are very young. The patient to Steven's left is an 11 year old African French girl who is always surrounded by extended family of brothers and sisters – all gorgeous. The boy to his right is Algerian and 13 years old. His father is rather funny. He is thin as a whippet, and just as frisky, with a voice like Don Corleone. He is omnipresent during the day, mostly in the corridor and around nearly every corner (I think he exists in triplicate!). His exchange is typically "Ca va mieux? Ah c'est lent. C'est dur!" (Better today? It's slow, it's hard!) His son is very sick at the moment at one week post-transplant. It is so hard on young kids in this situation – I can't imagine how difficult it is for their families. Other patients I have encountered include two little girls of about seven, a young boy in his teens and a middle aged woman. I hope they all make a good recovery.
We are coming into the holiday season now, so many of the personnel are taking annual summer holidays. Prof. Socié will be gone for two weeks from Monday. This is a little concern – just as well we have great confidence in Dr. de Latour who is wholly competent and just has such a pleasant nature and disposition.
Let's hope tomorrow is another excellent day.
Evelyn, Matthew, Steven and Ellen
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:
Tonight I had to go out to a Church function. It was a Marriage Care organisation celebrating its 40th birthday. The UCM (Union of Catholic Mothers) were asked to look after the catering for the evening. We do a lot of this and have an idea others look at us they see FOOD printed on our foreheads. There were a number of speeches and I was feeling very impatient as I wanted to be home to read your latest report. It was worth waiting for. Thank you for the information about the other patients. It helps bring the broader scene into focus. How sad for the families of the young children. It is sad and hard for all of you really. Weather here is so hard to predict. Joe has put a builders tower up so he can paint the front of house. So often it seemed about to pour but it didn't. There is great delight in our neighbourhood as our next-door neighbours have become GREAT Grand-parents. Margaret's grand-daughter, Serena, will be 25 tomorrow DV How you young people are determined to make me aware of the speed of the passing years. Hope you had a good 21st Feargal but it will be better when Steven and Ellen can join you at a later date DV. Keep those white cells growing, Steve. So glad the other discomforts are clearing up. God be with you and your family which of course includes dear Ellen. I must away to my bed. Good night, God bless and tons of love and hugs
from Auntie Mae and all here xxx xxx xxx
Dear Evelyn, Matthew, Steven, Feargal and Ellen,
Good to read these positive results, and welcome to those 800 hundred blood cells which are developing into Steve's body. May they multiply by 1,000,000!!!
Lots of love from Marbella,
Bert and Cristina
Just brilliant...the only way is up...God a Yazz moment...I really am showing my age and suspect musical taste!
All the food, TLC (in abundance) and sheer determination appear to be a winning combo Steve.
Love as always
Aideen
Dear Steve,
This is Fionnguala Ellen's Grandmother from Gorey in Wexford. Arlette and I have been reading your story, you are very brave but you have no choice as you must go with the treatment now. Glad you are making progress. You are on our prayer list. We will keep in touch with your website.
Bon courage Fionnguala and Arlette
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