MONDAY EVENING
I couldn't update the website last night as I couldn't get internet access, so this blog covers two evening's worth.
Thankfully, today has been very quiet and uneventful, so I will keep this update short.
Blood sugar is now very high as a result of the treatment, so Steven has had all his chocolates removed – he is not a happy camper about that! However, all other reactions to the medications seem to be under control, so that's very positive.
The head of the clinic did his rounds today and seemed to be quite pleased with how things are progressing. Steven now only has two more days of chemo, as Wednesday will be a medication free day before Thursday's graft.
Just as well Steven was brought up in Belgium and speaks fluent French. It would be very difficult to manage this situation as a patient without being able to communicate adequately. This is not like Belgium where all medical personnel seem to be multi-linguistic.
So, it's all good!
SUNDAY NIGHT
Hello Everyone,
We're now almost completing day 3 of the conditioning treatment.
Last night, Steven had a strong reaction to one of the medications administered to kill off all lymphocytes (white blood cells that help fight infection). His blood sugar had steadily risen during the day, as had his temperature and blood pressure. Halfway through his dinner he developed a slight headache which rapidly deteriorated into an excruciating one within minutes. When asked on a scale of 1 to 10, how he would rate the pain, Steven estimated a 7. I think he should have rated it higher as he was literally writhing in pain - unusual for him as he has always had a very high pain threshold, even during childhood. With rocketing blood pressure, he was immediately given strong painkillers and loxen (to reduce the pressure). We stayed at the hospital very late until eventually he fell asleep, but he did have a rough night.
Today, he has been much better and pain free. He's now had actrapid (insulin) and loxen added to his daily quotient. His nurse has just explained that his white cells have now dropped to only 200, down from 2,200 yesterday (4 - 10,000 is the normal range). It seems likely that a full re-sterilisation of his room will soon begin as his immune system has now been almost fully annihilated. He did quite a bit of sleeping this afternoon, probably because he missed out on sleep last night, but also because it is now quite normal to feel tired given this radical treatment combined with the sudden deterioration of his immunity.
This evening he is looking very bright, has eaten a huge dinner, and is getting full use out of his PS3, so all is well.
Will update soon,
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:
Evelyn & Mathew
Hi! My name is Punit. Met steve in Mauritius for Mahesh & Ina's wedding. Spent a wonderful week getting to know him. I wish him the very best for his treatment . I pray to god for his speedy recovery and strength for you all during this difficult period.
Please convey my best wishes to Steve.
Regards
Punit
Hey Steve,
the summer won't be the same without you...
Very best wishes and luck.
Kev
Dear Steven, Matthew & Evelyn,
Very best wishes to all for a speedy & successful outcome. I have forwarded this site to Frankie in Mexico but his use of internet is infrequent to say the least. No doubt Steven will hear from him sometime!
Warmest regards,
Margot Wall
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