Dear all,
I thought I might provide a brief update before the weekend kicks in – it's hard to believe it's Friday already. The time since Monday seems to have gone quickly. This may be further evidence of how our judgement of time has become a little distorted, or it may be just that we are settling into our own rhythm of having Steven at home.
We still maintain a very regular presence in the hospital. This afternoon, Steven was back there again for yet another platelet transfusion. He had had a blood draw early this morning and based upon the results of this they decided to remain cautious and go ahead with the transfusion. His counts today were: 4,900 for white cells; 9.6 for haemoglobin; 4,136 for neutrophils; and 23,000 for platelets. In case any of you are wondering about the degree of almost daily fluctuation across all counts, it has to be said that blood lab results are never absolutely accurate: the body also has its own range of variability even within a 24 hour span. In summary, small deviations up and down are to be expected and totally normal; however, the overall trend should be one of stability and increase until normal ranges are achieved across all categories of blood cell.
While Steven was in the hospital, there was a call from Trèfle 3. Evidently, blood cultured from Tuesday's draw had shown an increase in the cytomegalovirus present in Steven's system. This virus is now above what they call 'threshold' level. The virus itself is herpes-like and, in advanced stages, the symptoms are similar to mono (glandular fever). Most adults harbour this virus in their bodies, but their mature and healthy immune systems will usually keep it suppressed. Steven has now been prescribed yet another high dosage anti-viral drug which needed to be ordered at the pharmacy at a cost of 1,600 euros per box – he needs two boxes. It's hard to imagine how the high cost of some drugs can be justified. If success is cost related, then this has got to be a winner. Luckily all of our medical costs are reimbursable!
In theory, we are now at the halfway mark of the recovery process – may the next 50 days just roll by.
Here's hoping you all have a good 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:
Thank you Evelyn for making everything so clear for us. Yes the days fly by and a wet weekend looms for us. Joe has got the Tower in place for the last lap of the house painting. I have become his helper and I really admire him for what he is doing. He is terrified of heights and there he is on the top of this contraption and working away at scraping and brushing the walls. He managed to get a "primer" on this evening which is a sealant for the paint to go on. It needs 4 hours to dry and as we are promised a lot of rain over the weekend he risked doing this work so it is dried in time.
We enjoyed the company of a young squirrel in our garden yesterday. I know! They are vermin but we allowed it to enjoy the birds peanuts while Joe took a number of photos. They have become numerous in the area in spite of being a built-up area. Mind you there are a lot of trees around our area. Today a gorgeous fox lay on top of our neighbours garage roof. I couldn't get positioned to take any photos. The birds dont seem to mind their company. We have a cat that pops in for its saucer of milk every few days. It is friendly to a point but is quickly spooked. Because of the wet we also have a few frogs hopping about between the flowerpots.
Had a long chat with an old friend who used to live opposite to us in Cloughjordan. He rang to sympathise about Margaret and to check her surname. It was lovely to have someone to talk to about her . We went down memory lane of Cloughjordan and the people . He was delighted he could recall so much. I felt a great joy talking to him also.
I must go to bed. Have a happy weekend. Hope you are recovering from your latest visit to the hospital Steven. You are doing marvellous TG and we hope and pray the coming weeks will be as wonderful. Love and hugs
from
Auntie Mae and family xxx xxx
Not long in from Mass. It is a very wet day and getting worse. I got a few funny looks when I commented "It's a soft Day. TG" How are you Steven? I think of you often and although I am very well up on the medical side I wonder about YOU. You seem to be coping very well with all you are going through. I try to put myself in your shoes. How would I have coped? We haven't met since you and Feargal were quite young. Of course your Gran and Gran'dad have kept us aware of a lot of your adventures etc. Some day I would love to meet you all again. You are an inspiration to us all and have taught us to be more aware of how silly we are to get hung up about trivia. Met a friend's daughter at Mass and she was almost scared to believef her A Level results. She got 4 As and has got a place at Cambridge. She says it all hasn't sunk in yet. It was a delight to see her so bubbling up with excitement. On Wed at Mass her mother was in a tizz with anxiety as she waited for the results next day.
Have a good weekend Steven. Thinking of you all as you know.
Love
from
Auntie Mae and family xxx xxx
Dear All,
We're very well aware that you have no time for boredom in Paris. Your days seem to be very, very filled with trips to the hospital, medicine intake, food (I suppose) and rest. The good news is that now you're on the good side of the 100-day period and soon this will be over. By the way, I cannot imagine why a drug can cost 1,600 euros a box!!! I suppose that a lot of very expensive research went into that particular one that Steve needs now, but that amount of money is more than an average spanish salary!
Lots of love to you all,
Cristina and Bert
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