Dear everyone,
Every day brings some new developments and today has been no exception.
Matthew and I were here bright and early to accompany Steven to gastroenterology for his gastroscopy. We had already had a conversation with Socié who had arrived in Steven’s room just as we did. I can honestly say that he is really monitoring the current situation very closely and is frequently in and out of Steven’s room checking on things. He stated categorically that this is GVHD of the gastrointestinal (GI) tract and that the scope was merely a formality which would only corroborate this diagnosis and provide fodder for a further lab analysis. The treatment plan was already set to begin immediately. This consists of upping the steroid intake again (bit of a shame this has to happen) and adding a few new drugs to battle the GVHD. One of these is Etanercept, which is a relatively new drug being used for this purpose.
By 10:30, we began to make our way down for the GI fibreoscopy. Steven was feeling very poorly at this point as he had had a bad night, feeling completely dehydrated despite all the liquids being transfused. He had not been allowed any drinking water from midnight last night and had not been allowed to eat anything since Monday morning to give his stomach a rest – not that he had any desire whatsoever to eat! All of his nutrition is currently being delivered intravenously, as well as all his medications. Eventually he was taken in for the examination which didn’t take very long. When he was wheeled out they pointed out that the operation had not been entirely successful as Steven’s stomach was completely full. How could this be, you may ask when he had not eaten in almost 48 hours. Mystifying!
Back on Trèfle 3, the nurse was more than perplexed to hear this news. Socié eventually rushed in to explain that GVHD can sometimes cause a minor paralysis of the stomach which then ceases to empty properly. He immediately ordered that Steven’s tummy would need to be drained of its remaining contents. This is how we find ourselves this evening with a small nasal tube which has been inserted since this morning to drain away all the tummy fluids.
Despite the horrors of all these intrusive medical techniques, Steven is actually feeling better this evening and in much better form. The removal of tummy fluid has made a good difference. Its presence really seems to account for a lot of the difficulty he was having with swallowing and feeling congested. Hopefully, the new treatment regimen will begin to work soon and we can turn a corner in terms of mystery temperatures and unidentified flying viruses!
Love to all,
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.
5 comments:
Dear Steven, we're all glad to hear that you are feeling a bit better this evening and we hope the new drugs will work very well for you. Michael celebrated his 50th birthday today so we're just back from a meal out in Dublin to mark the occasion. Joe had given him a present of the front cover of The Irish Times 50 years ago today - a fascinating page. The cover story had a big picture of Laika, the Soviet dog sent into space and it was just one of various Russian themed articles - true Cold War stuff!
I'm finishing up my job on Friday after nearly 10 years so am looking forward to working mostly from home for the next couple of years. Michael works mainly from home too so we'll have to claim our separate offices!
As always, our thoughts are constantly with you Steven and we send you all our love.
Marian, Michael, Nora and Joanna xxxx
Dear Evelyn, Matthew and Steven,
A difficult day but at least progress was made. Keep it up; we are thinking of you.
Cristina and Bert
Evelyn you are truly marvellous. No matter what happens you give us a very thorough update on Steven's situation. You have a great way with words and a great sense of humour. It means so much to us to know first hand what is happening. Although we are miles apart we feel we are sharing some of your heartache and turmoils. It is wonderful when we read of any improvement or promise of same. Thank God for todays little break through. Steven , you must feel so much easier without your congested tummy. That is horrible at the best of times. Hopefully you will sleep well and start a new day with more successes.
Good night, God bless you all and tons of love
from
Auntie Mae and family xxx xxx
Almost time to say Good afternoon. It is gloriously sunny here but with strong gust winds which makes for a degree of coolness. It is just delightful to see the golden leaves gracefully dancing to the ground. The birds are singing and flitting in and out of the gardens. "Our" stray cat has been along for a lot of attention, enjoyed her saucer of milk and is now lazily washing and preening herself. Hope things are well with you Steven. You are so much in our thoughts. That goes for your family also. I must get back to chucking out. Why did I think so much stuff was important?!!!!!!!! If there was 2 of anything I seemed to collect it....... Never again. For now loads of love
from
Auntie Mae and family xxx xxx
Steve,
Sorry to hear of all the ups and downs. Must say, with this new immune system beginning to kick out all the "foreigners" and "aliens" in your body, I'm begining to wonder whether you should be signing up to the BNP on your return to Manchester! ;-p
Hope you feel better very soon and take your time in responding to me on Facebook (hint hint..).
At least your football team are getting results for you whilst you are out there - who are Besiktas? 8-0.
Your buddy, Nick.
Post a Comment