Dear everyone,
It’s difficult to take a positive view of things at the moment. Today was another truly awful experience – unbearable for us to witness but most of all impossible for Steven.
Last night, Steven fell over while getting out of bed (due to total weakness in his limbs) and ripped the NG tube from his nose. So, at 4am in the morning, Yannick and colleagues had to reinsert a new tube back into his stomach. By the time we arrived, very early, this morning, Steven was completely exhausted and traumatized from this happening. Naturally, it took him most of the morning to recover.
At the moment, there is considerable internal bleeding throughout his GI tract. This is as a result of the inflammation and raw soreness caused by the GVHD. They are transfusing platelets every 12 hours for coagulation. Meanwhile, Steven’s haemaglobin count is being hit hard and relentlessly as a result of direct blood loss.
The suffering is immense – I’m not going to dress this up for you and try to state it differently.
We do have a brilliant nurse, called Heléne, who has tremendous experience with GVHD in patients. She has a wonderful rationalizing effect and can see a way through this. Who knows? No matter how much one prepares information-wise, pre-transplant, nothing could ever lay adequate readiness for this reality.
We hope, we hope, we hope ……….
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.
4 comments:
Oh my dear, dear Evelyn and Matthew! How heartbreaking for you. It is not possible to imagine what you are going through. Poor Steven. How much more can you endure? Believe me when I say we wish we could share some of your traumas for you. We wish there was some way, any way, to help you. Thank you Nurse Helene for your ray of optimism. May God reward you. Mass was offered for Steven yesterday am (Sat) and the Gospel spoke of the need to pray and the POWER of prayer. It is hard on Feargal too. Well please God the worst is happening now and each new day will bring a solution to some of the problems, A little progress.... any little progress . and then to have it sustained. God bless you all and our love in abundance
from
Auntie Mae and family xxx xxx
We are all immensely immensely sad. We are praying every day and Jessica lights her candle of hope every day. We do believe in miracles and ask for God's help.
Mary, Kenny and jessica.
Have just got in from Mass and am thawing out. It is bitter cold with a strong wind blasting at us. Hope there is a small settling of the problems. We hope Steven is a blt relaxed today. You are so much in our thoughts. Some day we will meet and recall some of the events of recent months or maybe Steven will quite happily prefer to put it all behind him. That time will have to wait but just to think about it is helpful. God bless you all for now.
Auntie Mae and family ) Joe, Julie, christopher, Pauline Iain and Natasha) xxx xx xxxx xx xxxxx xxx xxx
... and we hope as well with you!
Lots of love,
Bert and Cristina
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