It's been another eventful but long day of waiting here on Trèfle 3.
To begin with, Dr. de Latour was concerned this morning that Steven had had to be placed on oxygen. With his temperature still sky high, thoughts quickly turned again towards the lung situation. An x ray was felt to be necessary and yet again they were not happy with what they 'thought' they could see. Socié appeared at this point and said they felt there had been a technical glitch with the x ray technology, therefore another x ray was essential.
By the time I arrived, just before 12 noon (with Steven's hot lunch in tow), there was talk of fluid on the lung. Another x ray done and examined, de Latour said it was definitely not fluid but that there was now a spot on his left lung that needed further investigation. (This is not the same lung where he had the pneumonia, by the way.) Another scan was deemed to be order of the day. More waiting, waiting, waiting ……
Feargal sat with Steven all afternoon. Steven was taken off morphine as his body was not handling it very well and it was felt it was having too much of a negative impact upon his oxygen levels. A different painkiller substituted, a paracetamol shot was given when Steve's temperature rose again to around 40˚. He still remains on oxygen.
Matthew and I arrived early evening, as Steven was reaching exhaustion point. Eventually at about 7:50 we were called in by de Latour. He explained that, following the scan, he would have a discussion with the pneumologist and, based upon the results, they would decide whether a fibre-oscopy is needed to further investigate this potential lesion. This involves sending a tiny camera through the nose and into the lung to have a look around. Steven had this done before during his pneumonia bout and found it most unpleasant. Due to Steven's present condition, this would now need to be done under anaesthetic and in intensive care in case there is a problem. This apparently involves an entire morning (8 – 3:00) in intensive care.
It's now 9:00pm and Steven is back in his room, post-scan, and the whole re-sterilisation process with the iodine wash starts over again. We will only know the scan results tomorrow morning.
So, the swings and roundabouts continue. Looking at Steven now, it's hard to accept the paradox of this situation – that he needs to be made so ill in order to be made better. Let's hope tomorrow is a better day, with better news.
Evelyn, Matthew, Steven and Feargal
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.
8 comments:
My heart goes out to you all. Please God the morning will bring better news. Just remember there are so many thinking of you and praying for you all. I wish there was some way we could help you. Is there anything you would like us to do or say? Anything?
We love you all so much. God bless and and renew your strength daily
Love
from
Auntie Mae, Joe and family xxx xxx
Hi Steven - this one is from Marian:
Hi Steven
I'm sorry I haven't had any success with Comments up to now and I'm hoping
Joe can get this up for me as the girls really wanted to say hello and to
wish you well and of course Michael and I do too! We've 3 computers here and
we couldn't do it so far on any of them. We'll keep trying though! I sent a
card but I believe you have no access to the post box at the moment either
so foiled on that front too. Well done to you all for the diary - we read it
every evening and we're thinking of you all the time and feel we're on
Trefle 3 - virtually! I know you're having a rough old time of it but
hopefully you will feel a lot better soon. We've planned a week away in
Youghal from 21st July and we're hoping that the weather might improve.
Today there was a regatta in Dun Laoghaire for young people, over 100 of
them in little sailing boats. Anyway sudden gusts and most of them were in
the water, thankfully nobody was badly injured but it was the main item on
the news with over 30 ambulances down by the sea and the air sea rescue were
kept busy. Yesterday just up the road from where I work in Stillorgan, there
was a shooting incident, drugs related I believe so lots of police activity
there too as you can imagine. You probably know the area well as it's close
to Belfield. Anyway, hope you get our messages from Joe and we'll keep
working on the technology here so that we can communicate directly.
Lots and lots of love
Marian and Michael
And this one is from Nora:
Dear Steven
I love you very much and I hope you will get well very soon. I'm on my
holidays now and am going to a summer camp everyday. Today we saw Shrek the
Third which was quite good but I can't wait to see the next Harry Potter
film next week! Tomorrow we're supposed to go to Brittas Bay but it is
lashing rain and very windy so not sure if that's going to be great fun.
Next week, me and Joanna are going to a GAA summer camp which should be good
too. I think of you every day and I read your diary with Mama every night.
Please get well soon.
Nora xx
And one more this evening from Joanna!
Dear Steven
I hope you will be feeling better soon. I am having fun at my summer camp.
We had a teddy bear's picnic today but it rained in the park and we had to
go back inside. I went to my friend Eva's house after and we played with her
hamster OJ which means Oscar Junior. We also have the same tattoo on our
arms that Jack Sparrow from the Pirates of the Caribbean has. It washes off
after a few weeks. Tomorrow we are having a fancy dress party and I am going
to go as a warrior as I have a chainmail t-shirt that I got when I was on
holidays in Nottingham this year. I'm going to bring my bow and arrow too! I
love you and I hope I will see you soon again.
Joanna xx
We are thinking of you all each day, your courage will be rewarded.Steven is heroic. We look forward to better news soon.
Charlie Carole and Peter
Dear Evelyn, Matthew, Steven and Feargal,
We are all crossing our fingers for better news very soon. It just doesn't seem fair that Steven has to go through all of this. Our thoughts and prayers are with you all.
The Sheffields.
Morning/ Good afternoon,
This older generations there all complete confused about blogs and anything past emails hehehe. Hope everything will get better soon. Glad to hear your playn PS3 again you'll be an expert soon I hope. Just letting you know were ALL thinking about you little aoife included. I know Mary and Brid are very worried and will hopefully get a computer soon so they can leave messages and check up on you. We all send our love and prayers xxxxx
Your cousin Niamh, Ronan, Noeleen, Nicky, little Aoife, Great Auntie Mary and Great Auntie Brid (dont tell them I put great in it makes them feel old hehehe) :)
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