Dear everyone,
Steven is still in the hospital. Both doctors, Robin and Nguyen felt that to be really cautious, it would be better if he remained until Monday at least. This really came as no surprise to Matthew and me, but Steven was disappointed as he had hoped to be out of there, by yesterday, Thursday.
There are ongoing difficulties with pain control. This afternoon, Steven was literally wracked by pain in the centre of his back. It was the type of pain that is so strong it spoils the appetite, prevents the ability to concentrate on anything else and really makes it difficult to find a comfortable position. This is very stressful to witness, because as parents, we cannot solve the situation. Meetings with Dr. Robin yesterday, and Dr. Nguyen today, has really not thrown too much light on the situation. They feel that it is muscular in origin and a matter of pain control. The problem is that the current 24 hour infusion pump of Acupan is not sufficient. They are now talking of a subcutaneous analgesic med, which apparently would be stronger.
The physiotherapist was in today. She also feels that the pain is muscular due to wastage of muscle mass and the impact of steroidal swelling. Hot compresses were recommended.
Steven had no temperature today. He received a haemoglobin transfusion in the afternoon. Nobody is worried re the lungs, or the herpes.
We will return to the hospital this evening at around 7:00pm with Steven’s dinner (and the newly acquired hot compresses). We are still producing the evening meal from home, as the hospital food is just too awful for long term survival! Tonight we will also bring enough food for Matthew and myself as we plan to ‘picnic’ together before we watch the Ireland/France rugby match with Steven at 9:00. Let’s hope Ireland have ‘discovered a plot’ by this point – or else we’ll never live it down, surrounded as we are by ‘les francais’!!!
Love to all,
Evelyn, Matthew and Steven
Dear Roman,
Please call me at 33669298994 to arrange your visit to Steven, who should certainly be out of hospital by next weekend.
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:
Now we all know the Rugby result....Poor Steven. My heart goes out to him in his terrible pain. I know how awful it is for you Evelyn and Matthew as you must suffer with him. I wish I could help...
Love to you all.
Auntie Mae and family xxx xxx
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