Based upon the scan results from last night, it was decided that the fibreoscopy should go ahead. Steven was eventually wheeled off in his bed, all covered up, for this procedure at about 11am this morning. Matthew, Feargal and I waited outside and it took much longer than expected. Steven re-emerged after about an hour and was taken back upstairs for another encounter with iodine and another central line cleanse.
By about 3pm, all was well and Steven was in his bed sleeping. Sandrine was his nurse today and she is just fantastic – really thorough, organised, with a good sense of humour. Of course, she had not received any feedback from the lung scope, so more waiting ensued. She did explain that Steven's oxygen levels were much better today and his temperature was normal. This was attributed to the fact that he is now off morphine and has started what they called cortico treatment (basically a cocktail of steroids). The steroids almost always have an immediate impact upon temperature.
At around 6pm, de Latour came to the room and announced that they were pleased with the results of the fibreoscopy. There was no sign of either a bacterial or fungal (yeast type) infection. They could see some tiny nodules in his lung which look viral and samples of these have been sent to the lab for culturing. They will treat with immunoglobulin which apparently helps weakened systems fight against a virus. He felt that Steven's high temperature was mostly just transplant related and was more to do with the two cord bloods fighting it out for supremacy in Steven's body. One of the cord bloods will, of course, eventually become the sole creator of a new immune system and blood supply for Steven.
In all, this was very good news. Steven was looking obviously better today. He is still in a lot of discomfort eating and swallowing, but this is also a little better. His tummy has really settled down, and while his appetite is not great, he has no major difficulty with either stomach pain or digestion. Leg discomfort has also disappeared.
So this evening, the world looks good again. I don't know about the rest of you, but all these ups and downs have the capacity to turn the nerves into shreds. I am sure there are many more ahead, so thanks for bearing with us. You know, it is said that for a transplant it takes about 100 days for the average patient to really get back on their feet. So that leaves a mere 91 days to go…..
Today was also Feargal's 21st birthday, so while a hospital may not be the best environment in which to start off his celebrations, he'll make up for it with a night out with his friends after he arrives back in Brussels tonight. HAPPY BIRTHDAY FEARGAL!
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.
6 comments:
What great news TG. 91 days! Such a short time compared to the life time ahead, Steve. Happy Birthday Feargal How the years have flown by. You must be exhausted parents but at least you are on hand to see and hear all that is happening. We will sleep easier tonight DV as a result of your latest update. Are you getting any kind of rest? Hope so. You need to keep your strength up. God bless you all. Love and tons of hugs from
Auntie Mae, Joe and family xxx xxx
Hi Steven,
Great to hear that things improved for you today (or at this stage yesterday – it’s 2am now). I dropped down to Johnstown today with a printout of all the comments on your website so far – 11 pages. Although your Grandad prints off the blog everyday, for some reason the comments don’t work on that computer. Well, it’s only Windows 95 and I’m sure you remember from when you used it yourself that it’s not exactly state of the art anymore! Anyway your Gran keeps a file on her sewing machine with all the printouts and also any articles and information she has collected along the way. They were happy that your parents managed to gain access to the letter box back in the apartment – although no surprise that there was no sign of my card for Feargal – sorry about that Feargal – it’s on the way! I better finish up now as I’m working tomorrow and unfortunately will miss the tennis final – am sure there’s lots of local interest in that French girl who has done really well to get to the final. All the best, Joe.
Feargal is 21? Thanks Evelyn, you've made me feel very old all of a sudden! But Happy Birthday Feargal!
Glad to hear all results have come back as best they can. Long may that continue.
I can imagine your nerves are in pieces, they were for us when Lois was in hospital, but as the saying goes "This Too Shall Pass". Steven will be "back on his feet" as you put it in no time, I'm sure.
With love,
Nick
Dear Evelyn, Matthew, Stephen and Feargal,
First of all, happy birthday to Feargal. We still remember you as a tiny little baby.
Hold on tight you all, the ups and downs are the price to pay for good health.
By the way, tomorrow is the beginning of San Fermín (the bull-running fiesta Hemingway described so well). We have decided not to run...
Thinking of you and wishing you all the best,
Cristina and Bert
This is indeed a real life roller-coaster, I can only imagine the state of the nerves over there! Yet the days continue to mount and the news continues to be positive. Though never having seen any of the medical team I have started to imagine them as real characters, definitely down to the quality of the blog (well done!) - I will update when I can see them clearly enough to cast! Thinking of you over this weekend Steve - I am now back in Dublin and will think of you as I get to watch some of the tennis - which I hope Evelyn and Matthew you are also getting to see something of, for purposes of sanity and some attempt at stress release. PS I am also reminded of just how old I am - Happy Birthday Feargal.
All my love
Aideenxxxx
Dear All,
I have just read through every day of your tumultuous journey and Steven you are quite the trooper.You are all fantastic with your strength and good spirits. I'm sure all these ups and downs are exhausting,let's hope for many more 'ups' to come. Steven,i'm sending you energy and comfort everyday. I hope all of you manage to get some rest and keep your energy levels up. Thank you for writing this blog, what an excellent idea. Thinking of you all, eibhlinn xx
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