Sorry about the absence of communication yesterday. Although, it was only Steven's first full day back in a normal environment this did not stop him from setting about organising a wireless computer network in the apartment so that we can all be online simultaneously. Naturally, this took more time than expected with a lot of unforeseen and inexplicable problems. Finally, it was up and running by nearly midnight, at which time (unstoppable) Steve was exhausted. Thence, no blog ….
It's really fantastic to have Steven home and not to have to do the twice daily sprint to the hospital. Things are just so much easier and relaxed. He did have to attend hospital today for a platelet transfusion, blood and sugar checks etc. This all went very well. He had 4,900 white cells, 10.0 haemoglobin and 31,000 platelets. In theory, it isn't critical that he receive a transfusion with platelets at this level, but they went ahead anyway, just to be on the safe side. As predicted, his blood sugar is lower since he came home, and his blood pressure was also fine today. They are still concerned about his kidneys, so they have momentarily stopped the cyclosporine and have advised drinking 3 litres of water per day. Luckily, Steven is always drinking water, and so is not too perturbed by this recommended consumption. His next appointment is on Tuesday morning at 9:00am.
Since his return, each day is fairly filled with organising and scheduling the ingestion of the large sack load of drugs he has been prescribed, including the insulin shots. He also does a daily walk with one of us and is becoming familiar with the neighbourhood. Our apartment is actually located just inside the 19th arrondissement, on the border of the 10th. There are two really nice walks: one is to a large park called Buttes Chaumont, which is a really pretty family park; the other is along the quays of the canal which is full of bars and restaurants and is usually very animated. He has to wear the mask at all times outdoors.
Siôn arrived around lunchtime today. At the moment, they are just mucking around the apartment, which is nice, having gone for a walk earlier in the afternoon.
It is likely that I won't update this blog absolutely every day from now on; however, rest assured that I will cover all new developments and continue to write entries on a very regular basis. We'll rely on you all to continue to check out our progress.
We hope you're all having a good weekend.
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.
8 comments:
Welcome home Steven. I had what I consider a nice blog ready for send on Thursday night. Every attempt to send it failed. So beltedly I greet you all. You were very much in my thoughts today as I sat in the garde, in wonderful sunshine and writing numerous letters to people in case they do not know of Margarets death RIP. It is a strange world without her in the background. I have so many wonderful memories of our lives as we grew up. Thank God for the chances t speak with her and tell her so much.
The house painting goes along well. Poor Joe has aches in muscles he did not know he had. He is accepting he is not a youngster.... The last time HE did this job was 34 years ago. Meanwhile we paid someone to do it.
I hope this blog goes through. Our love to you all. Have a good weekend and please try and get some much needed and deserved rest.
from Auntie mae and family xxx xxxx
My apologies for a lot of mistakes. Usually i preview things but I forgot. Hope you can understand what I meant to say......
Love
Auntie mae xxx xxx
Hi Steven, Evelyn and Matthew (and Fergal in Brussels).
Well done Steven on your wonderful progress - it must have felt wonderful to finally leave as an in-patient! - and bravo to Evelyn for the excellent up-dates, which I missed so much while we were away. - Just read them all now to fill in the gaps - though Ellen has been keeping me well informed. Evelyn, I hear Tuscany is one of your favourite places - would love to have bottled some of its magic to bring back to you! Thanks for having Ellen again last week - the Thalys tickets are already booked for her return visit the week after next.
Best wishes,
Máire
Hello everybody, and a special welcome home to you Steven. Your progress in recovery is contiually delighting everybody here in Waterford.I have some news for you all, david and his wife laura are expecting again, only this time it's not just one baby but TWINS!!!!
Take care everybody, love Laura
Hi,
Got a chance to catch up on the Blog this evening as we are only just back from Ireland. Sad news for us that Mum passed away but good news for Steven that things are going so well. Great to hear that you are out of the hospital so soon!
All the best
Dear all,
Great news to hear that Steven is out of hospital and back in a domestic environment. Good for you all, we are quite sure of that. Take care.
Love and best wishes to you all,
The Sheffields.
Hope all is going well for you Steven. Weather is a bit so-so but I am managing to keep my tan topped up. Joe progressing well with his decorating. Oh how he aches tho'! How are you Evelyn and Matt? It must be nice to have a bit of normality in your lives. Please make sure you get adequate rest and if possible relax. It will take a little while to settle back to "normal " thinking. Who am I telling......!!!! Remember you are in our thoughts and prayers. God bless and tons of loe from
Auntie Mae and family
Hope your weather was better than ours. It rained most of the day, was blustery all day and so dark we had the light on most of the day. If it continues so it will be a long Winter. Got around to another bit of packing. Some very interesting properties available. We get their monthly property Sales catalogue and we look at them on the Internet. Hope today was another good day for you all. Love to you all
from
Auntie Mae and family xxx xxx
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