Dear everyone,
Today has been marginally better. They managed to stop the bleeding late last night through a combination of platelets, plasma and an ulcer healing product called Inipomp. Steven claims he didn’t sleep during the night but I think he is unaware of how much he actually sleeps. It seemed to me that he slept quite heavily from about 8:30pm until we left which was around midnight.
We were here again very early this morning. Steven was wide awake and looking lively. He got up and about, washed himself and even did a few exercises, goaded on by his nurse Daniel (who is middle aged, about six foot two, with a large walrusesque moustache). Daniel is very much a man’s man and the only words to describe him would be ‘totally bonkers’. He looks like he could sling a patient over each shoulder and still nurse on successfully for Tréfle 3. His topics of conversation are many and wide-ranging but usually relate to ‘manly’ things. Anyway, the main point is that he really keeps Steven stimulated and motivated without overstretching him, which is very important at the moment.
Although Steven slept for a few hours this afternoon, most of the day he has been alert, talkative, and very pleased that he is allowed a little drinking water. He seems to be more stable on his feet and have a little more energy. There was no further bleeding during the day but plenty of stomach fluid came pouring out of the gastric tube on a continuous basis. This evening a little bleeding started up again but appeared to be resolved by another plasma transfusion, after which nothing emerged for over an hour. What we all need to see is no more blood or tummy fluid in the tube.
This morning Matthew and I met with Dr. Ribaud who is an associate professor and the duty doctor for the weekend. I can’t say either of us really warmed to her. She didn’t really inform us of anything we didn’t already know. In a nutshell, they feel that there is a blockage in the stomach caused by inflammation from the GVHD – this is why the stomach pump is essential. The high dosage steroids, in theory, should stop the assault of the graft cells on the GI lining which should then give the entire system a chance to heal. In the meantime, the no food and drink regime provides a rest period which should help things stabilize and get us over this critical period.
We are planning on having Feargal over for a long weekend from next Thursday. His visit will be followed by Ellen from the following Wednesday. So, Steven has much to look forward to. He is not happy that these visits will occur while he is still in hospital but realizes his staying here for the foreseeable future is unavoidable.
I know you are all hoping and praying that tomorrow will be a better day again for Steven and that this GVHD is brought under control. Steven lives his life amongst tubes at the moment – it would be bliss to get rid of the nasal monstrosity.
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:
Dear Evelyn,Mathhew and Steven,
Good to read that some improvement has been made today. Hope it keeps this way in the next few days! Lots of love for all of you,
Cristina and Bert
Oh Evelyn what a wonderful report. Thank God for His mercifulness. We have prayed and prayed most of last night and today. So many people at Mass are praying also. Never mind Dr R. We had a local doctor who left a lot to be desired as bedside manner goes. I asked him WHY do you behave like that when really you are so caring. He looked at me and bruskely said : I dont have to be nice so long as I treat my patients properly". Come to think on it Evelyn you probably know as much as some of the medics now...... The main thing is that Steven had a better day and now could soon be on a good run of recovery. It will be lovely to have Feargal with you even for a weekend and then Ellen. It is hard on them having to be away during this rough patch. They wont mind visiting at the hospital but understand how Steven would rather be at home and free to enjoy their company. It will soon happen, please God. Good night to you all, God bless and love
from
Auntie Mae and family xxx xxx xxx
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