Dear all,
Another day at l'hôpital du jour on Wednesday. This went exceedingly well and the word 'perfect' was once again applied to Steven's clinical status. They do a very thorough analysis of literally everything during the 4-5 hours he's there – from blood analysis, to full physical examination, to x ray etc. etc. His results showed an improvement in both his kidney and liver function this time around, which is great news. He did need a haemoglobin transfusion as his counts showed this to be at 7.6. This was a little unexpected but thank goodness it's been almost four weeks since his last transfusion – while hospitalised, he needed red blood nearly every 7-10 days. He'd already had a platelet transfusion on Monday.
Dr. Lissandre feels that Steven is now showing early symptoms of Cushing's syndrome which results from the large dosage of steroids he currently takes. Essentially this manifests itself through a whole variety of symptoms (back pain, tiredness, easy and severe bruising, potential anxiety and so on) - the most outward being facial and abdominal swelling, while the muscle tone of arms and legs thins out. The steroid intake continues to be diminished on a weekly basis and this will eventually solve this problem, so nothing to worry about in the long term.
There was another blood draw, this morning, Friday, and this was followed by a top up of platelets in the afternoon, just to keep him safe over the weekend until Tuesday, which has now become the new day of attendance at the hôpital du jour. Today, they also announced that the infection in his central line has returned. Consequently, his transfusion was done into his wrist, with more blood samples taken to ensure the infection has not spread into his blood. The main difficulty with the central line is that the dressing they apply to cover it and keep it sterile never adheres to Steven's skin for very long and keeps coming unstuck, thus exposing the catheter to bacteria. They claim this is an unusual occurrence. The solution – antibiotics delivered directly into the line and an increase in his daily dosage of antibiotics.
Sadly, Ellen went home to Brussels this afternoon. She will attend her uncle's wedding in Cork next week, where she will be the bridesmaid. In the meantime we will really miss her as she is such a sweetheart of a girl, but hopefully she will have an opportunity to visit us again before she returns to university in September. Feargal, however, will arrive on Monday so the horizon is bright.
A happy and relaxing weekend to you 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.
4 comments:
On the whole all sounds positive TG. It is annoying that the infection returns in the central line. Is it not possible to find a way of dressing to prevent the line becoming exposed? I'm sure they are doing all they can, Maybe a word with a manufacturer could get them to create something? Hope you have a wonderful time at your uncle's wedding, Ellen.I'm sure you have mixed feelings about where you want to be. We had some wonderful weather here for nearly a week and I got my suntan topped up. It was nice to eat our meals in the gardens and revel in the warmth. We eat in the back garden at lunch time and move to the front for the afternoon/evening meal. The year has flown by and it is sad to see the leaves are beginning to fall. It has been an amazing time in the gardens as flowere have had a number of blooming periods yet we did nothing to them. maybe that is the secret? The schools open next week. Julie returns on Monday and is now in full charge. She is looking forward to the challenge. Pauline is hopping about as she fell awkwardly when dancing on a chair. She pulled the ligaments in her foot and ankle. Iain has enrolled at a local College. His sister, Natasha, will go back to school as will Christopher. They will now be in 5th Year. Gosh how the time flies by. Seems so short a time since they were starting at school.....
Thanks again for all your efforts to keep us informed, Evelyn. You must know how eager we all are to hear what is happening etc. You are all constantly in our thoughts and prayers. God bless for now and love
from
Auntie Mae and family xxx xxx
Its been awhile since we caught up with the accounts of Steven's progress, having been in Ireland again for a couple of weeks. Great to hear that things are going so well and we hope this continues. Its back to work for Christine and I now; like yourselves, we have had an unusual summer. Please God all news will be good news now.
Cher Mattew & famille,
Juste un mot de Bruxelles pour vous dire que nous pensons à vous et sommes très contents d'apprendre que tout évolue positivement.
Bon courage pour la suite !
Amitiés,
César y Begoña
Dear All,
It's great to hear that everything Steve is experiencing falls into a normal recovery pattern. Compared to the situation 40 days ago he's really doing well. What about eating? Since our last summer holiday week is cancelled, we have also given up "Operación bikini" and we're stuffing our faces in pasta and mousse au chocolat... Sorry, Steve!!!
Thinking of you,
Cristina and Bert
Post a Comment