Dear everyone,
Steven is just feeling more and more out of sorts as the days go by and there is no real solution to his present illness. Apart from the regular conferences with various doctors and our almost constant presence here, Matthew and I can do nothing to relieve the situation for him. He is really not in talking form and even tv is proving too much for him. There is an air of total exhaustion about him and sleep is his only recourse away from the discomfort. Again, he has spent most of the day asleep.
De Latour was in this morning to share the newest and ever-evolving medical opinion. Apparently, they found no viruses in his lung and are now not concerned about the cloud which they initially felt was a bacterial infection. All results from the lab were negative. Where does that leave us?
Thoughts are now directed towards the oesophagus and gastrointestinal tract, mostly as a result of the diarrhea, the swallowing difficulty and the inability to eat. The feeling is that this may be the beginning of graft versus host disease (GVHD). As you may, or may not know, GVHD occurs when the new graft starts to identify cells in the body of the host as alien and begins an onslaught to destroy them. The most likely places to develop GVHD is the skin, the liver and the gastrointestinal system. They now suspect that Steven’s temperature vagaries may have been the result of low lying GVHD all along.
There is also the lingering herpes issue. Another explanation for the gastric discomfort would be the migration of herpes into the oesophagus but this would not account for the diarrhea.
It is also plausible that the current stomach condition may be just the result of some tummy virus. This has not been ruled out.
Their solution is to do yet another scope, this time of his gastrointestinal tract. So, tomorrow morning at 10:30 they will perform a gastroscopy to have a look around and see if they can spot any inflammation which would signal GVHD.
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.
3 comments:
Dear Evelyn and Matthew, thanks for keeping us updated even though it must be very diffiult for you to record Steven's bad days. However we are sure that Steven will overcome this latest setback with the help of the doctors. We really admire your courage Steven, to put with so much medical procedure & medication, but it will be worth it in the end. All our very best,
What can I say! It is wonderful that so much knowledge and technology is available but why can't they sort out herpes and not unknown conditions? Oh I am just letting off emotions. Steven take your time. You have plenty of it. You are so brave and taken everything that has happened in your stride. Relax now. The time ahead will bring positive results and you will get back to " eating your family out of house and home", as they say. As always you are in our thoughts and prayers. God bless you all
Love
from
Auntie Mae and family xxx xxx
Dear all,
I know it's easier said than done, but you shouldn't despair. We're sure that they'll sort this one out as well. In that hospital they seem to have seen everything!
Don't give up the faith, Steven. We're all with you.
Lots of love,
Bert and Cristina
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