Dear everyone,
We spent a considerable amount of yesterday day at the hôpital de jour. There was a lot to cover as Steven needed his Foscavir transfusion, plus platelets, x-ray, various examinations and his central line cleansed and dressed. It all takes time.
We started out with Steven looking a little flushed and with a temperature of 37.7˚ - always a worry. There was a doctor we hadn't dealt with before doing the rounds today, a Dr. Rocha. He is a really nice and informative fellow, but unfortunately is off to Milwaukee for a year, so that was the first and last we'll see of him. The news was mixed.
Dr. Rocha was concerned that the amount of painkiller being consumed was not having an adequate impact on the back pain. He prescribed a medication to reinforce bone structure and also advocated a scan during next week to look specifically at the spine. As we know, corticosteroids have a very negative impact upon bone strength and health: as a result, suspicion now is shifting away from the muscles as being the source of the discomfort.
More disturbing news was that the blood draw yesterday showed that Steven has some inflammation in his blood. They reason that this is caused by a new infection brewing. It is not known what this infection may be, but the trick, as usual, is to 'nip it in the bud'. Consequently, further antibiotics have been added to the daily raft of drugs being consumed.
The herpes is still present and treatment needs to continue.
When queried, Dr. Rocha felt that Steven is some time away from being released back to Brussels. His feeling was that there is not enough experience in Brussels in dealing with double cord blood grafts to provide an expert post transplant follow up for Steven. He also outlined that Steven will need to be graft versus host disease free (not a problem at the moment), have no infection, and be producing his own haemoglobin before they will consider freeing him for a return home. It looks like we may be in for an even lengthier stay here. Obviously, Rocha's opinion will need to be verified by Prof. Socié, but quite frankly, we are not really surprised.
In the meantime, Steven's blood counts have again received an almighty blow, probably due to the mysterious infection which has been gathering force in his system. The white count has dropped to 1,800, with neutrophils of 1,260. Hopefully, his new round of antibiotics will perform wonders and Steven's counts, like the phoenix, will rise again magnificently.
Today, Steven is looking better and seems to be a little more limber in his body mobility. Yesterday, he went for his first walk outdoors since his hospitalisation. We hope to follow this up by plenty of alfresco excursions this week. Let's hope the weather becomes a bit more clement. All grey, with showers, here at the moment.
Have a relaxing 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.
3 comments:
Dear All,
If Brussels weather is anything to go by, I don't thing you'll be doing much walking outside today. It's raining cats and dogs. Anyway, I hope that Steven is feeling much better today and that those antibiotics are doing the trick. Even if you have to stay longer in Paris, the important thing is that, when you all come back to Brussels, there is no need to rush back to Paris. And think of the advantage of picking up a beautiful French accent instead of speaking with our awful Belgian French ones... (I'm sure that, by now, you're all perfectly capable of saying "quatre-vingt-dix-neuf" without blinking an eye instead of the infamous "nonante-neuf").
Lots of love,
Cristina and Bert
Hey Steve,
Sorry to hear things have taken a little turn for the worse in the last few days. You've been through so much, I'm sure you can pull through this with ease also.
Life for me has been a little frantic, and as such I haven't been the best at keeping in touch so I apologise. I have managed to visit a gold mine in Lapland in the last few weeks, along with sampling the delights of Sweden and Croatia, though as most of it is work, it's hardly something to shout home about! Talking of which, I am in the process of buying my own place in London now also. I'm suddenly feeling too old, so get better quick and we'll head out sometime in Manchester (guaranteed to age me by 10 years in one night but worth it!)
Best of luck with getting over this blip. Chin up and I'm thinking about you.
All the best,
Nick
Dear Steve,
Thank you to share with us your progress with its up and down. I'm not too good at writing and so I do it seldomly but I need to read regularly about you and I feel happy you could reconnect with outside world, starting with a walk. I'm thinking of you very often as I believe thoughts are much stronger than words to accompany you in your daily experience of fighting to go for... longer walks soon or jogging :)
I hope you do well and that you feel less pain with time passing. I can see you have great support from your friends and family; they all wish the same, and so, just like them, I wish you the very best.
This was a lil hello from Luxembourg.
Athelstane
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