Dear all,
The boy is home! Following discussions with the doctor on duty yesterday, it was announced this morning that he would be released from the pneumology unit at 1pm today. Matthew and I were totally relieved to hear this, as it had become crucial to Steven to get back to the apartment and a more normal daily life. Of course, it is not possible to be ever totally confident in this situation, as we have learned that the best laid plans can go awry at the last minute and hopes can be dashed so quickly, given Steven's current medical status. Seeing really was believing on this occasion, and, boy, was I both happy and relieved to see him standing outside the front door of the apartment. It's been a really long two weeks.
I had remained behind while Matthew went to fetch Steven in order to welcome the HAD team (hôpital à domicile) as it was not clear when they would arrive. We had already received a delivery of some of their equipment toward the end of last week – this consisted of a drip stand and paraphernalia, and an adjustable bedside table. In the end, it wasn't until after we had all had lunch that two nurses, Veronique and Christophe, arrived with further boxes of various meds and more gear. It looks like they mean business! They quickly attached Steven to his perfusion (a much nicer word than drip, I feel) of Foscavir, got him comfortable and then left. At the moment, Steven is sleeping. Christophe will return in one hour to remove the drip and check again on Steven. From today, this routine will unfold several times a day, until the treatment has been effective. I have never heard of a system like this before (maybe I'm just behind the times!) but I have to say, I am impressed. Steven will continue to attend the hospital de jour once weekly for his usual check up and bloodwork.
Although he is delighted to be home, Steven is very tired and becomes exhausted quite easily. We are hoping that this will improve now that he will gain so much more exercise just from moving around the apartment and going about his daily routine independently. He is anxious to have the physiotherapists return to help him regain some muscle tone. Hopefully we can get something organised this week, but it will need to be a gently, gently approach to regaining some fitness and energy this time around. We need to keep in mind that he is still very fragile in his post pneumonia condition.
If there was just some way we could be sure of warding off all future infections and viruses, then maybe we could achieve true peace of mind. However, that's not the reality of this situation. We'll just have to continue to roll with the punches and strive to deal with every new challenge that presents itself as I'm sure there will be many more ahead.
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:
Welcome home, Steven. I am so happy for you all. Tomorrow is another day and please God each day will bring a little more strength. You have been through so much lately so now it is possible to get positive again. Love to you and family
from Auntie Mae and all here xxx xxx xxx
Congratulations to all of you, and welcome home to Steve! It's great that you're back home. I pray for all bacteria and bugs to stay very far away from you. By the way, do you know how they call the drip stand and paraphernalia in Dutch hospitals? "The christmas tree"! And that's the unofficial name! Even doctors call it like this.
Lots of love from Bert and me,
Cristina
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