Hello all,
Steven will be in the hospital four weeks tomorrow. In some ways this seems like a short period; in other ways, it feels like it's been this way forever. It's hard to describe, but the time spent appears largely unquantifiable, possibly because the everyday milestones are completely different and also the fact that so many profound experiences have occurred in this place that is so alien to the normal mundane environment.
Steven was looking a little bit weary today. He hadn't slept well last night and the leg pains are becoming rather draining despite the best efforts at pain control. Nonetheless, he did do 5 kilometres on the exercise bike, which is a good start to rehabilitating some degree of energy and physical activity. The drip line attached to his hand is also somewhat irritating as it is so much more 'in the way' than the central line. Many of the oral meds also taste really vile – these are the ones that are too toxic to be fed through the vein in the hand.
White cells were at 3,700 today, while the haemoglobin count had dropped a little to 8.3. This resulted in a transfusion this afternoon. We are still waiting for the results of the chimera blood test which should be available very soon.
The doctors' perception this morning was that the palms are slightly less red. He has been supplied with cortisone cream to battle this problem.
We received two beautiful hand crafted cards from Nora and Joanna (Steven's littlest cousins) this morning. I managed to attach them to the outside of the small glass pane, under the blinds, on Steven's room door, where he can see them clearly. Such great works of art and loving wishes deserve a place of prominence despite the fact that Steven is not allowed cards inside his room.
Feargal hobbled back to Brussels this evening. The discomfort in his knee has lessened but is still present. I'm sure it will be better soon.
That's all for now,
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.
4 comments:
Thanks for your daily news Evelyn. It would be hard to imagine what it has been like for you and Matthew during this month. Yes Steven you too . I could do with a bit of that exercise. At the moment I couldn't swing a cat for boxes packed, waiting to be packed, bags of stuff for the Charity shops, more bags for the recycling tip. Visits to the loft have to be done in short spurts. It has 34 years of everyone's clothes, books,records, cards, a rocking horse, 2 bicycles plus all the things saved just in case......
Schools will soon close here for the Summer hols. Julie and Christopher (our eldest daughter and our grandson) are away to Scotland for some weeks. They stay in a beautiful place near Ullapool (Airdmair).
Joe progressing with his cleaning and painting front of house. He is very brave to do it as he has a fear of heights. He did it 32 years ago and as he said he was a lot younger. He aches all over from climbing the tower, moving the contraption etc.
Hope you all get a decent nights sleep. Are there any Yoga exercises that might help ease the discomfort? I can imagine the lovely cards from the girls. They are very talented God bless them.
Will leave you in peace now. Good night, God bless and love
from
Auntie Mae and family
Hi Steven
Hope you managed to get a better night's sleep last night. Can't imagine what it must be like having to take all those meds. Best of luck with that chimera blood test. Fair play to Evelyn for describing everything so clearly - just as well she doesn't have my tendency towards total writer's block! Anyway, don't overdo it on the bike and hope there's the odd decent thing on telly there - you're not missing much here at the moment, unless (unlikely) you count Big Brother series 8!
All the best
Joe
Dear Evelyn, Matthew, Steven and Feargal,
Time is really going fast: already 20 days gone by. Sorry to read that Feargal could not stay on his bike!Speedy recovery, Feargal! For Steven I hope sleep will be better in the next few days. Wishing you all the best,
Cristina and Bert
Thinking of you Steven...take care and speak to you soon...xxxxxxxx farah
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