Steven has been looking at me for the past week, all the while tugging the hair on his head, saying, "I thought this was all meant to fall out?" "Don’t tempt fate" and "Never look a gift horse in the mouth" have been my usual responses. Well, today it is happening: the hair is literally wiping away off his face and head. Steven had grown a beard in hospital as he felt there was no point in shaving if it was all going to disappear anyway. Ellen had already done a nice job of buzz-cutting his hair in the middle of June, and it really suited him; so, I think he will still look cute with no hair. (That may be a mother's rose tinted spectacles gaining the upper hand in the judgement stakes!) Privately, I think he finds the prospect of being clean shaven as 'cool' enough, more of a fashion statement type of thing. Tonight he is going to finish the job off properly and completely shave his head and chin. I'll be interested to see how he looks tomorrow.
Sunday is usually very quiet here, but today we had Wimbledon! Steven and I watched it together and really enjoyed it. I was so glad my favourite, Federer, won. Steven didn't really have a favourite but just enjoys good sport when he sees it. I don't know what we're going to watch next week, now that it's over. We may have to turn to DVDs.
Today was a really good day for Steven. He had a long nap early afternoon and seemed very refreshed after it and in very good form. He has mastered the morphine dosage so that it helps him eat but doesn't affect him too negatively otherwise. He had soup and yoghurt at lunch; and tagliatelle with smoked salmon, followed by yet another yoghurt and ice cream this evening. That's not doing too badly, I feel. At the moment, he cannot tolerate anything that's acidic and finds dairy based produce much easier to consume than other foods. His intravenous feed is still up and they added a bag of separate vitamins nutrients yesterday. He's certainly getting everything he needs diet-wise. Temperature and oxygen levels also remained within normal parameters today.
That's about it for the moment.
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.
13 comments:
I really enjoy reading your food intake. I am sure you will look great when the hair is gone. You will feel cooler in every sense. Joe built a Tabernacle for our Church and presented it on 29th June. There was a lovely Consecration Service during the Mass. Joe designed the Alstars, Lectern, Baptismal Font and Paschal Candle Holder and all was in place 17 years ago. This was the missing factor to set off the whole. There is a Church web-site on www.rcrainham.freeuk.com. Many other features have been added to the Church by Joe but more another time. I hope you don't mind me telling you our news as I feel it must be boring to hear the same comments every time I blog. I am so happy to read your latest news. Thank you for keeping us all informed. Goodnight and God bless
from Auntie Mae, Joe and familyxxxxxxxx
Test from Marian
Hi Steven
We've had a breakthrough and can finally send our own messages after following an intensive'Blogging for Dummies' Course! Glad to hear to got to see the Wimbledon final. We completely forgot about it but are totally wrapped up in HarryPotteritis at the moment and have been watching all the interviews, previews and especially Luna Lovegood from Co. Louth! We have our tickets for Friday for HP and the Order of the Phoenix and the final book ordered for 21st July, just in time to bring on our holidays to Youghal. We've booked a 'villa' down there for a week so we're looking forward to that, once I get the car fixed. Brought all our greenery to the dump today and when I pulled the handbreak a little too firmly, it came off completely! Ah well, not too bad for an almost-vintage, 21 year old car, which reminds me ... hope you had a great birthday Feargal. Your present is on the way, just fashionably late! We're delighted that you are feeling a bit better Steven and send you all our love. Marian, Michael, Nora and Joanna, with a special purr from Rocky xxxxx
Hi Steven,
Just to let you know that Declan and Margaret send their best wishes from Tullamore. They don't have access to the Internet but I have kept them posted on your progress.
Look at it this way, Steve...you and I have been competing for a while now on the hair loss stakes. You may have the upper hand this time, but I'm sure my folicles have a good shedding in store and will be catching up soon!
On a brighter note, if a bit of Schadenfreude cheers you up, then you'll be pleased to hear I'm still at work (Sunday evening at 10pm!) and have been for almost 30 hours this weekend now! Oh, how I wish I was a student again.
Keep up the good work and getting better!
Nick
Hi Steven, this one is from your Gran:
Hi to our wonderful, courageous and gorgeous Grandson, Steven. My thoughts and love and admiration are with you all the time. Thanks to your brilliant diary, Evelyn, I almost feel I am with you there in Trèfle 3. I’m picturing you, Steven, minus your hair, but still gorgeous! My thoughts are with you too Evelyn, Matthew and Feargal – you are all playing a big part in helping Steven through this difficult time.
Lots of love to you all xxxx
Granny
Hi again Steven, glad you enjoyed the tennis final – good to see such a close match going right down to the wire. Seeing Bjorn Borg there brought back a lot of memories – on a more mundane level, one memory that still amuses me is of playing your Dad on a bad serve day! Sorry Matthew! All the best, Joe
And one more from your Grandad:
Hi Steven, as the one who runs off the daily blog copy on Windows 95, your Mum’s descriptive accounts bring us in a sense almost to your beside. So clear and concise as to be almost visually enacted. Particularly Day 11 with the inevitable loss of hair and her nice descriptive turn of phrase, which gave the whole encounter an emotional poetic touch to it! Really, you are an inspiration to us all, Steven. What more can I say? Love to you, Mam, Dad and Feargal. Tom
Hi Steven,
You wont remember me, we did meet at Marian and Michaels wedding 14 years ago last week.
I too have suffered hair loss due to illness mine lupus,im now on a good road and have found a few news hairs, which are very precious, i go around showing them off,as you will before too long, make sure you have a new hair brush
and luxurious shampoooo, and treat em kindly.
Hang in there , your doing good,
love and best wished,
iney and Ray ( michaels sister0
Hi Steven, (and Evelyn and Mathew)
Ellen is getting ready to head off to Gare du Midi this afternoon - and looking forward to seeing you soon - this time not on web-cam!
The dietician in me is very pleased to hear your appetite is better - and that you are getting your vitamins!! Take care of Ellen for me!! By the way, she and I enjoyed the tennis final too - good match!
Love and best wishes,
Máire
Hi Steve,
Following your progress here in rainy old Dublin. Glad to hear that you're doing well despite some set backs. Hopefully it will all be smooth sailing from here on!
All i can say is poor you - French TV is enough to make anyone despair!
I'm sure you already know about all these but in case you don't and you're bored click on http://www.ovguide.com/ where there are some websites with loads and loads of TV shows and films to download for free. I've already made my way through the whole of Grey's Anatomy, Nip Tuck and I'm on to the X files.. Addictive stuff, beware!
Lots of love,
Stéph x
Hi Steven
Michael and Marian have been keeping me up to date with everything so I just wanted to say hello and to wish you good health and to say that you are in all our prayers.
Love from
Josie Doorley (Michael's Mum)
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