It’s been a strange few days. Paris was hit by a major transport strike which left the roads gridlocked, with no movement on the railways and very little on the metro. This threw our routine into chaos as we are now much further away from the hospital and rely almost totally on the public transport system to get to and fro. It has all been very time consuming and energy draining on a purely practical level. Murphy’s law strikes again! A couple of weeks ago this wouldn’t have mattered at all as we could just hoof it to St. Louis.
The further complication of all of this was that Steven’s exit plans from the hospital all had to be cancelled at the last moment. They could not guarantee that the HAD (home hospital) folk would be able to operate according to schedule in the heavy traffic conditions. As Steven still needs twice daily perfusions of Foscavir, now that the herpes has returned, we only managed to get him home by late afternoon today, instead of the Wednesday evening / Thursday morning, as had been planned. Anyway, the important thing is that he is home with us in our new abode. The HAD nurse has already visited before dinner and everything is now well in hand. Steven is very, very happy and relieved to be home again, needless to say.
They never did find the cause of the discrete temperature highs. Apparently, Steven became quite a topic of conversation both in pneumology and haematology in their striving to find a reason. Eventually, as a last resort, doctors from maladies infectieuses (infectious diseases) and ophthalmology were called in for consultation – all to no avail. Just before we left this afternoon, Bergeron and Nguyen arrived. Bergeron suggested the recent lower grade temperature bumps, just above the normal range, may have been due to the resurgence of the herpes. Who knows?
The plan is that Steven will have a further scan next week to once again check things out in his lungs. Depending on what they see, this may be followed by yet another bronchoscopy which would require an overnight stay in St. Louis. Hopefully this latter eventuality never arises. Outside of this, he will have his usual day at clinic and also attend for any transfusion needs as he is still heavily dependent upon platelets and haemoglobin. It is believed that the recurrent infections are hampering his ability to produce all of his own blood products. However, his white cells are currently above 7,000, with neutrophils near the 4,000 mark. This is good, but may also be his body’s response to fighting off any looming bacteria or viruses.
Hopefully we have now entered a period of lengthy respite from hospitalization.
I will update again soon, to let you all know how things are progressing here in the 16th.
With love,
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:
Welcome home again, Steven. I am so pleased for all of you. I had heard about the transport problem on our local radio because it was likely to cause difficulties for the supporters getting to the Rugby match. I did worry how it might affect your movements etc. I am feeling very posh as I write this on my new flat screen monitor. Steven I am not surprised to hear you are a topic of conversation. I bet it is not justyour medical history that is an attraction either...... So many areas of the hospital must be interested in you and your progress. We hope your stay at home is a long one. Tomorrows match will be a real knife edge one. It would be wonderful if England won but it will be a hard earned win if they do. The S A are very swift and seem to have a great strength when passing. We will either have to have an early dinner or a very late one. Hope nobody will dare PHONE. I am going to bed happier knowing you are all together again. Thank you for address Matthew. God bless and love to you all
from
Auntie Mae and family xxx xxx
How frustraaaaaaaating for you! I wish the strikers could be told, I'm sure they don't have any idea of the mayhem and upset they caused. But Steven is home now and let's hope that all goes well. It must be such a relief for you all to be able to live more normally. I was at the hospital yesterday for a couple of hours and couldn't help but think of how you have spent so many days in one. I have Thomas (Morgan) staying with me for a few days as he has found himself "between beds"! He has been telling me of his adventures travelling around Africa.... Enjoy the rugby tomorrow!
Sheila
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