Dear everyone,
We were back in hospital four weeks since yesterday. For all of those weeks Steven has been suffering immensely both physically and mentally.
Since Sunday there has been a steady, further deterioration of his condition. Until last night Steven was both very agitated and upset - very distressing for us, but much moreso for Steven.
Yesterday morning, we were called by de Latour. The GVHD has overwhelmed Steven’s body and his lungs, liver and kidney have all been strongly hit. The prognosis is that we have only a few days left. They are trying to make Steven as comfortable as possible – mostly this means increased painkillers and a high level of sedation. Nothing more can be done for him.
Heartbroken, does not come near how we feel. A life without Steven is unimaginable.
My niece, Aideen has been here since Sunday (looking after us) and Feargal arrived last night.
Don’t expect daily updates from here on – this has been impossible to write.
Love to all,
Evelyn, Matthew, Steven, Feargal and Aideen
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.
32 comments:
We are absolutely shattered by this news but are hoping and praying that a miracle will still happen.
Our love to you all.
The Sheffields.
Dear All,
Whatever science says, we just keep on hoping. So do our friends and our catholic friends keep on praying for you all.
We're both with you hundred per cent.
Lots of love,
Bert and Cristina
Dear Evelyn, Matthew, Steven, Feargal and Aideen
we are so very sorry to hear that Steven, despite fighting so bravely, is losing this terrible battle.
You have all shown such courage and determination through out these long and painful weeks.
We really hope that Steven will be protected from further suffering and that you will be able to share the next few days together as a family, united by your commitment and dedication, and strengthened by your ever lasting love for each other.
Our thoughts and prayers are with you all
John, Christine and Kyle
This has to be as God wills. Yes it is heart breaking for you all but you have done everything to give Steven a chance of a life. He has been so brave and did his best to fight back. The love of all your families, friends and others are with you now. Give your time and love to Steven and each other. Every second is precious. I know this from my last days with Margaret. God and His Holy Mother comfort you all now. There is still life and so we go on hoping but it has to be Thy Will Be Done, Oh Lord.
With LOVE and HOPE
Auntie Mae, Joe Julie, Christopher,Pauline, Iain and Natasha xxx xxxx
I am so terribly sad to read this news. Was so much hoping it turns differently. Sending love and prayers to Steven and his family. I cannot give up hope for him.
I am still hoping for better with all my strength,
A.
In the name of the unit G8 and all your colleagues here in Brussels, please know that we are really affected by this news and that we pray for Steven.
Catherine
Dear all,
We are all shocked by the news. You have our full support; all our prayers go for Steven.
Javier & G7
Mahesh updated me yesterday and said he planned to see Steven this weekend and I was happy.
I am devastated to hear this news.
I suffer with the Mathew and Evelyn and the Keyes family.
Vasundra in New York will be very sad when she hears of how Steven is faring.
I hope and wish that against all odds Steven gets better.
Vijay Bhardwaj and family
(Who all - not just those in Brussels - know Steven well.)
I am so so sorry for you all and pray that Steven is in as little pain as possible.
I hope and pray that somehow he may still get better.
xxxxx Rachael
We are so very sad to learn of these developments,after all Steven's courage.
There are no words to be found.
Our thoughts are with you.
Peter Carole and Charlie
Matthew, Evelyn,
Steven, que je ne connais pas, souffre. Mes pensées vont à lui, et à vous ses admirables parents dont je peux imaginer l'insupportable sentiment d'impuissance.
Courage !
Amitiés,
Philippe
Words can't express the shock we are all in, and hope so very much that a miracle will happen.
hoping and praying,
Laura Power, David Power Margaret Power, lalura Cody and baby Eve x x x x x
Dear Evelyn, Matthew, Steven, Feargal and Aideen,
My heart goes out to each one of you, and i pray that whatever happens, you may all find some peace and solace in this time of deep distress. Steven, - thank you for touching all our lives with your wit, your incredible mind, and your great humour. Praying for the best outcome for you all...
with love,
Laura Knott
So devastated to hear this news...still hoping and praying for a miracle...
All my love and thoughts are with you and Steven,
Lola x x x
Dearest Steve,
You have come so far and have been so incredibly brave, never letting your illness dampen your spirits. I think i can speak for everyone who knows and loves you, by saying that you have been a true inspiration with your amazing attitude, your courage and sense of humour.
We are all thinking of you so much, sending you all the love and encouragement in the world.
With lots of love,
Stéph (O'Keeffe)
Dear Steven and family,
I have just read your latest post and can only imagne how utterly devasted you must be. Stevens strength and fight against this illness has been truly inspirational, as has your support as a family.
Know that you are all constantly in our thoughts and prayers. I just hope your pain subsides and a miracle occurs soon...
Sending all my love from Santiago,
Alison Delplace
I can't believe what I'm reading, it's so awful, I am shocked and speechless. I have such great memories of Steven from school, and he has been so brave all these months, with such heart-warming support. I truly hope that somehow, somehow, it is not his time to leave us yet.
All my thoughts and strength are with Steven and you all,
Miriam
Please know that all my thoughts and prayers are with steve and your family. he is a great friend and brother in life, and was a great classmate. Please let him know that we are all cheering for him and we know that he is always with us.
with lots of friendship and love
Giulio,
(guatemalan classmate, and friend)
You have been in our thoughts all day. It was such a shock to read the news this morning but since then we have kept in mind Steven's power to fight all that came his way. Can that happen again? Please God there is another miracle waiting to happen. Everything becomes insignificant compared to what Steven has done in the 155 days. He has been an inspiration to us all and I am sure all the Medical staff who had any dealings with him will have been inspired too. We hope Steven is not suffering. We are with you all in Spirit. God bless and comfort you all
Auntie Mae, Joe, Julie, Christopher, pauline, Iain. Natasha and Uncle Michael xxx xxx xxx
No words can convey how tragic this is. My prayers are for Steve to pull through against all odds. My warmest thoughts remain with him, his family and everyone close to him. I was in Steve's class at school for 6 years and will always have fond memories of him from those days. All my best wishes,
Simon Brittain
This is such sad news. You have shown such strength as a family. May your last days together be as peaceful and loving as possible. Sheila in Brussels
Dear Evelyn and Matthew,
We are so sorry to read your news of Steven's deteriorating condition.You have all faced the situation so bravely and we truly wish the outcome could be different.We are thinking of you all.
Pam and Tim Hall
words cannot express the hope i carry in my heart. my love to you all.
viki smith xx
We are very saddened by this news. We are thinking of you all and wishing you strength and courage.
Your colleagues in G2
Dear Steven Evelyn Matthew and Feargal,
I am heartbroken to hear this news. All my love to Steven and the family.
Still very much hoping.
Brendan
Steven, you are so brave. All my thoughts, hope, strength and courage are with you and your family.
Love and hugs,
Dre xx
This is devastating and deeply saddening news. I cannot imagine the pain this has caused you all. I am just thankful that you can all be together as family during this difficult time.
Wishing you all love, courage and strength.
Daniel Lucas
Dear Steven, Matthew, Evelyn and Feargal
We continue to light our candle of hope. We are desperately upset by the news. Our hearts and prayers go out to you as a family, together in this time of anguish. May God give you strength.
Mary, Jessica and Kenny.
No words are adequate to express how terrible this is and has been and how empty we are all feeling. All my love to you Steve and your family, I'm always thinking about you
Sarah
Dear all,
I only heard that Steven was so ill last night. I am very upset to hear the news and only wish I had found this site earlier. Steve you're a great lad you made Ashburne Hall a great place to be.
I am thinking of Steven and wish everyone the best.
Andrew West
Ashburne Hall, Manchester Uni
Dearest Steven,
It has been far too long since I last saw you, but I want you to know that throughout all of this my thoughts have been with you. You were such an amazing person to have grown up with - clever, kind and so incredibly witty. You were forever making people laugh and smile, and we all thank you for giving us those happy memories.
I hope that you and your family, who have been incredibly strong throughout all of this, take some comfort from knowing that you are loved and cared for by so many people.
Praying for the best possible outcome for you all.
Take care Steven, lots of love always
Helen
-x-
To Steve,
A blokiest bloke, a fine footballer, a dear friend. My thoughts and prayers are with you and your whole family.
Alec
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