It's been rather quiet at home and on Trèfle today. Ellen departed for Bruxelles this afternoon. She will attend her dad's 50th birthday in Ireland next week (Happy birthday, Kevin!) and hopes to return to Paris for another visit in August.
Steven slept most of this afternoon, due to a very noisy Tréfle activity level last night – and possibly a bit of a hiatus effect following Ellen's departure. Otherwise he was in good form and eating very well.
The virus Steven has been harbouring has been identified. Apparently the polyps in the lung are indicative of herpes. Almost 90% of adults carry this herpes virus, it just never surfaces as a healthy immune system will usually keep it subdued. In compromised immune systems, like many other viruses and infections, it can just arise spontaneously. This is just one of the myriad potential complications of stem cell transplants. A blood test will be done tomorrow to check if this virus is also in his blood. If so, then his medication will again be changed to deal with this. Socié is adamnant that this is 'none of our concern' – I think he means this shouldn't concern us at all.
Steve's white cell count reached 1,100 today which seems truly magnificent. Socié called around this afternoon to bid us all a fond adieu before he leaves on vacation. He is off to Normandy for two weeks: last year he spent his summer hols in Killarney. He was a bit worried about the weather as it has been and still is rather cold and grim in Paris and Northern France ….. I digress! Anyway, he explained that tomorrow Steven will have a special peripheral blood test to assess the level of chimerism in his marrow. In simple terms, this means how much of Steven's blood cells are from the donor and how much are Steven's own. It is expected that the ratio at this point in time should be 80:20, respectively. It will take ten days to have the result of this test. Socié stated that he feels good engraftment is taking place and that things are going exceptionally well for Steven.
At this point they are also actively looking for any signs of graft versus host disease (GVHD). This occurs when the new donor stem cells begin to attack other cells in the body. Mostly, GVHD affects the skin, stomach and intestines, but in more serious cases the liver and other organs can also be impacted. While a certain amount of GVHD is considered good and necessary for proper engraftment, too much can lead to more serious complications. The good thing about cord blood transplants is that GVHD is usually less of a problem owing to the naïve nature of cord blood stem cells. At present Steven shows no signs of having this problem. The palms of his hands are a little red, but this is considered positively as they feel it is proof of active engraftment of the new stem cells. This will be carefully monitored over the coming weeks and months.
That's all the latest on the medical front. Let's hope more positive things lie ahead.
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.
1 comment:
Hi Steve, Evelyn and Matthew,
Ellen arrived back safely to Bruxelles yesterday - it was great to get all the details! Evelyn and Matthew - thank you for making her feel so welcome, as usual. She was very happy to have been there for the good news! Thinking of you, Steve, every day!!
Love,
Máire and Kevin.
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