Dear everyone,
Today has been a very difficult day. Steven’s temperature is still capable of roaring towards 40° and he is feeling very poorly. He has no appetite, a cough and a pain in his chest. He has been asleep for the bulk of the day.
The fibreoscopy went ahead this morning, as planned, and what they saw more or less confirmed their suspicions of what they could see from the scan. The opinion is still favouring various viruses combined with either a bacterial or fungal infection. There is also some inflammation in the airways. They will not have official results from the lab until this evening, so it is unlikely we will hear anything conclusive until tomorrow.
Steven is currently receiving four different types of broad spectrum antibiotic and is on oxygen at the moment. They have also tried a gamma globulin transfusion – which is a blood plasma product containing antibodies which sometimes helps to counteract a virus. This had to be removed after Steven’s temperature continued to climb in response to it. There will be a change to more targeted antibiotics tomorrow, once the problem is specifically identified.
None of this is good news. I will try to let you know as soon as there is further information.
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:
May God and His Blessed Mother comfort him and
enfold him in their loving care. May they give all of you the strength to keep Faith in His love for you all.
Love
from
Auntie Mae and family xxx xxx
Back from Mass and offered for Steven's recovery. Hope there is even a slight improvement overnight. What i would like to do to the viruses cannot be written here. Maybe a good nights sleep. the A/Bs and knowing we are all rooting for you might bring some change. God bless
from
Aunyie Mae and family xxx xxx
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