Hello all,
It's been a while – time has a habit of just sifting away ……..
Steven continues to do well and remains in relatively good form. All of his life, Steven has been pragmatic with a very strong sense of rationale: so, despite being largely confined indoors, taking shed loads of drugs all with their own negative side effects, and having acquired the rounded appearance that results from imbibing large quantities of steroids, Steven remains very resilient and views all of this as something he just needs to get through. When it comes to endurance and the ability to maintain a steady morale, Steven would seem to have it in spades.
He and I trekked to Buttes Chaumont (local park) this morning for the daily constitutional. Today, Steve decided he would like to attempt steps (lots of them)! The park is quite hilly, thence the name Buttes (which means 'hills') and attracts a lot of fitness fanatics for training purposes. In fact, this park seems to be buzzing with folk, morning, noon and night – always a reminder of the density of population in the wider urban area of Paris. Anyway, Steven managed the step challenge quite well, although it usually takes his leg muscles quite some time to recover after a burst of activity like this. We enjoyed our walk around the park's lake, which also incorporates a cave area with waterfall, including quite large stalagmites and stalactites (every geographer's dream) – this park has it all!
We had another blood draw yesterday at a local laboratory which is just around the corner from where we live. Outsourcing the blood count to this facility is really convenient as it saves a trip to the hospital and the waiting around for results that this would entail. The results showed: 6,300 white cells; 9.5 haemoglobin; 5,216 neutrophils; and 24,000 platelets. The hospital took a decision not to proceed with a platelet transfusion this time around, but to wait until tomorrow when Steven has his next appointment. These are very positive results, with the exception of the platelets. However, as you may know, platelets are usually the last cell group to regenerate following a transplant, so this is not unusual.
So, we have another hospital appointment tomorrow at 9:30am. Hopefully, this won't involve a day long sojourn in a hospital bed, like it did last week. They try their best at St. Louis to make things as easy as possible, but they are incredibly busy in the day clinic, and with everyone's needs being so particular, it's got to be difficult to coordinate and limit waiting periods.
Ellen arrives back to Paris tomorrow which is just great. It's going to be really nice for her not to have to spend all that time in the hospital. Hopefully, the weather brightens up a bit to allow time outdoors in some sunshine. Looking at the sky at the minute, this seems unlikely, nevertheless, hope springs eternal!
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.
2 comments:
You are wonderful Evelyn. You give great descriptive info and take us along with you. It is dismal here. Continuous grey skies and I feel so awful. Unfortunately I am one of the S.A.D. people. This morning I decided to be very positive and I would get the washing machine going early etc. Loaded it up, switched it on and the water came pouring out all over the machine. Thank God for Joe. He quickly took bits and pieces off, checked this and that and in no time it was working again. Thank God I did not just switch on and dash away to do something else......
We have a Holiday weekend ahead. Julie and Christopher are due back then also DV. They seemed to be having a good time although Julie was hoping to get a lot of work done also.
Hello Helen. Enjoy your visit. I'm sure you will have plenty to talk about.
Love to all
from
Auntie Mae and family
Dear All,
We hope you're happy: dry and sunny weather for you on the menu for this weekend! We bet your walks in Buttes Chaumont are going to be really fun.
We cannot but repeat this famous Brussels cry that you have all heard before: "Up, up, platelets! Up, up, platelets!". I hope that they themselves are listening. For the rest, all the counts seem to be going quite well, I'm impressed!
Lots of love to you all,
Cristina and Bert
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