Dear everyone,
It's been four days since I posted on this website. In many ways, it seems like longer as time spans continue to feel very skewed in this situation. I hadn't intended to be quite so long away from the keyboard, it's just that our internet connection has been acting up since Sunday night. This status quo is still not completely corrected nor our connection fully reliable.
Things continue to go all well since Steven's arrival home. He does get very tired, even from just walking around the apartment, and stairs are particularly challenging. However, he remains undeterred and his walking stamina is improving daily. He can now do about 45 minutes, at what I would call a fairly swift pace.
Tuesday was his first day as an outpatient at the hôpital du jour (day clinic). They did a thorough physical, blood count, cultures, and the regular lung x ray. He had 4,400 white cells, 8.9 haemaglobin and 35,000 platelets. Again, he received a platelet transfusion just to be on the safe side. They reported that he was in good physical condition, with good vital signs, and that his blood cultures do not show any signs of advance of the herpes, cytomegalovirus or C difficile. They have already begun to gradually taper his steroid intake. So, all was well. Steven will have a further blood test on Friday morning to determine the need for a further transfusion, maybe over the weekend.
The day clinic at St. Louis mostly involved a lot of waiting, which is both mentally and physically very draining in its own way. I would describe his doctor there as 'breathtakingly abrupt', harbouring a tinge of outright hostility. This took us both very much by surprise as we have been well spoiled by Dr. de Latour and the rest of the shiny, happy people on Trèfle 3. This was quite a change of pace.
Our spirits were buoyed by the nurse in attendance, a fellow called Karim, who is just so cheerful, knowledgeable and encouraging. Steven was already familiar with Karim from the occasion of the placement of his first central line – Karim had monitored him and also counselled him very well about what to expect from the whole transplant experience. We also bumped into our former neighbour whose presence is now adorning the corridors of the hôpital du jour – he does like to keep his finger on the pulse! We had a quick look in on his son, Ahmed, who, like Steven, is also looking good and doing well, thank goodness.
Today is a bank holiday in Paris. Normally, this would mean extra life and activity, but this is not the case as the weather is still very grey and drizzly. Hard to imagine that we are now already into a ray-less mid August. No globally warmed summer for us it would seem!
Feargal has been here since Monday and returned to BXL this evening. He was so relieved not to have to sit for long stretches in the hospital this time around. We were delighted to have his company and miss him terribly now he's gone.
That's about all the news for now.
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.
4 comments:
Lovely to hear from you again. You spoiled us with your daily bullitins.... Today is a Holiday here too but not a Festive one.- Just an extra Mass at 7pm. Years ago we use to attend The Nenagh Show and I have great memories of that. Something tells me the event was changed to another date- that's if it still exists. Glad to read Steven maintains some progress. It is still early days and please do not overdo the exercises etc. It must get tedious at times wanting to do more and feeling you can do more but Patience can be a virtue.... Thinking of you always
Love and God bless from
Auntie Mae ^ family xxx xxx
Hi Evelyn,
Glad to hear things are going well. I was wondering if you could send me your postal address in Paris so we can send Steven a card? My email is okeeffe@kuririnmail.com
Many thanks
Stephanie
Dear All,
It's great news to read that Steve is back home and well. I'm sure he's enjoying the little pleasures of being in a free environment. Please, Steve, don't exercise too much or you'll make me look really lazy in this blog! (This is Cristina the Champion writing).
I'm afraid that we're also a little behind with our writing because Bert's father is not doing well at all. But we'll try to catch up.
Lots of love,
Cristina and Bert
Day 50 today!! - halfway there :-)
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