Hello again,
The weekend is always quieter here in the hospital. There isn't the same amount of people traffic and there is usually just one doctor in the unit. This weekend Prof. Socié is on duty and he has been keeping an eye on Steven and actively managing his medications.
Steven has had a high temperature since last night. They are not especially concerned as this is quite normal for this stage in the process and they are doing everything conceivable to keep him comfortable and pain free. They leave nothing to chance and try to rule out any possibility of virus or infection. For example, Steven has already had cultures done for a spot on his back and tear drops to rule out any possibility of infection such as chicken pox or conjunctivitis – his eyes have been a bit red, but are ok today. Both of these are highly unlikely causes of the temperature hike; however, they like to be sure.
In all, Steven has been more alert today than yesterday but is still taking lots of naps. He is moving around a lot better and seems more energetic.
We would sincerely like to thank everyone for all the messages of support we have received on this website and via e mail and telephone. Steven, particularly, greatly appreciates all the encouragement. At the moment, his computer is his main lifeline to the outside via messenger, facebook etc. In this situation, away from home and all things familiar and comfortable, one could feel very desolate: it's very soothing to know that people are thinking of us and following Steven's progress.
Love to all,
Evelyn, Matthew and Steven
Saturday, 30 June 2007
Friday, 29 June 2007
DAY 2
Dear Everyone,
Today has been a much better day for Steven. They now seem to have the leg pain under control, and while it is still uncomfortable, the discomfort is nowhere near as intense as yesterday. Almost an entire 24 hours of sleep has also made a difference. Although he has slept for lengthy periods this morning and late afternoon, in between he has been alert and chatty and in fair form. Feargal spent the afternoon visiting, so that helped ensure that Steven would stay awake. This evening he is watching the tennis and has finished his dinner, so things are more normal.
It's rather strange talking to him through the plastic curtains, however it's amazing how you get used to everything, given time and need. The intense sterilisation of everything continues. All the treats we bring have to be washed in pure alcohol before they can be slid around the curtain - even the oranges and bananas.
Feargal went back to Brussels this evening but will return next week for a few days.
From here on, Matthew and I feel that this is now a waiting game where patience is vital, as we expect plenty of ups and downs.
That just about covers the update for today.
Evelyn, Matthew and Steven
Today has been a much better day for Steven. They now seem to have the leg pain under control, and while it is still uncomfortable, the discomfort is nowhere near as intense as yesterday. Almost an entire 24 hours of sleep has also made a difference. Although he has slept for lengthy periods this morning and late afternoon, in between he has been alert and chatty and in fair form. Feargal spent the afternoon visiting, so that helped ensure that Steven would stay awake. This evening he is watching the tennis and has finished his dinner, so things are more normal.
It's rather strange talking to him through the plastic curtains, however it's amazing how you get used to everything, given time and need. The intense sterilisation of everything continues. All the treats we bring have to be washed in pure alcohol before they can be slid around the curtain - even the oranges and bananas.
Feargal went back to Brussels this evening but will return next week for a few days.
From here on, Matthew and I feel that this is now a waiting game where patience is vital, as we expect plenty of ups and downs.
That just about covers the update for today.
Evelyn, Matthew and Steven
Thursday, 28 June 2007
DAY 1
Dear Everyone,
Today has been very, very long and intense to say the least.
The first cord blood arrived a little before 11:30am - sooner than had been expected. A tiny packet (100mls) of bright red blood that was transfused into Steven's central line within about 15 minutes. This cord blood came from Holland from a baby born on 5th February, 2004. The second cord blood transfusion was underway by 3:30pm in the afternoon. This had come from the United States and the baby had been born on 1st October, 2002. It's almost unimaginable to think that, all going well, one of these sources of donor stem cells will one day make up 100% of Steven's blood cells.
It may surprise you to hear that Steven merrily snored his way through both procedures. He has been particularly exhausted today as he had virtually no sleep last night due to a malfunctioning monitor in his room which took ages to fix. He also is feeling quite uncomfortable with pains in his legs and discomfort in his stomach. The doctor feels this is one of the side effects of the cyclosporine (immunosuppressant) and painkillers have been prescribed.
This evening he has also been moved next door to a room which has been newly sterilised. All his belongings have also been removed and sterilised. The thick plastic curtains have been drawn around the bed, so he is now in almost total physical isolation.
We now enter into the really critical phase of this whole process. It takes an estimated 20 days for the cord blood stem cells to properly engraft in Steven's marrow and to start producing their own cells. A white blood cell count will be done everyday and we really need to see these cells as soon as possible. In the meantime, Steven will be at his most vulnerable for all types of infection, with little healing power in his own body.
Steven is forever the pragmatist and we have great faith in his resilience. At times today he looked like he was moving in slow motion, such was the level of his fatigue and discomfort. We expect that he may be spending a lot of time just resting and sleeping over the next days and weeks.
Evelyn, Matthew, Steven and Feargal
Today has been very, very long and intense to say the least.
The first cord blood arrived a little before 11:30am - sooner than had been expected. A tiny packet (100mls) of bright red blood that was transfused into Steven's central line within about 15 minutes. This cord blood came from Holland from a baby born on 5th February, 2004. The second cord blood transfusion was underway by 3:30pm in the afternoon. This had come from the United States and the baby had been born on 1st October, 2002. It's almost unimaginable to think that, all going well, one of these sources of donor stem cells will one day make up 100% of Steven's blood cells.
It may surprise you to hear that Steven merrily snored his way through both procedures. He has been particularly exhausted today as he had virtually no sleep last night due to a malfunctioning monitor in his room which took ages to fix. He also is feeling quite uncomfortable with pains in his legs and discomfort in his stomach. The doctor feels this is one of the side effects of the cyclosporine (immunosuppressant) and painkillers have been prescribed.
This evening he has also been moved next door to a room which has been newly sterilised. All his belongings have also been removed and sterilised. The thick plastic curtains have been drawn around the bed, so he is now in almost total physical isolation.
We now enter into the really critical phase of this whole process. It takes an estimated 20 days for the cord blood stem cells to properly engraft in Steven's marrow and to start producing their own cells. A white blood cell count will be done everyday and we really need to see these cells as soon as possible. In the meantime, Steven will be at his most vulnerable for all types of infection, with little healing power in his own body.
Steven is forever the pragmatist and we have great faith in his resilience. At times today he looked like he was moving in slow motion, such was the level of his fatigue and discomfort. We expect that he may be spending a lot of time just resting and sleeping over the next days and weeks.
Evelyn, Matthew, Steven and Feargal
Wednesday, 27 June 2007
Update 27th June
Dear All,
Today has been a fairly routine day with Steven doing more of the same kind of stuff – eating and drinking still featuring heavily as a highlight. His blood sugar is back within normal parameters so this might mean the welcome return of chocolate and cakes, as Steven was very quick to point out.
This was a chemo free day. However, the insulin and blood pressure medication did continue and a new product called cyclosporine was introduced. Cyclosporine is a very strong immunosuppressant drug which Steven will now need to take for the foreseeable future. Naturally, it has its own range of potentially awful side effects, but Steven seems to be tolerating it very well. It will operate to limit any negative response of the immune system towards the new stem cells, which could result in graft rejection.
Feargal arrived last night, as planned. It was great to see him as it seems like ages ago already since we left Brussels. When he arrived at the hospital at midday, I think he was a bit dubious about what Steven's condition might be, especially after he was instructed to don a sterile gown, hat, booties and face mask before he could enter the room. He was quite relieved to see that Steven is very much himself and really looking as healthy as ever. He took the afternoon shift with Steven at the hospital which freed up a few hours for Matthew and me. It was great for Steven to have a young person to keep him company for a change as I think he's beginning to be sick of the constant presence of one or other parent – or worse, both at the same time!
Tomorrow, of course, is 'D Day'. Apparently, the cord bloods are already here in the lab where various procedures need to be done to them before they are transfused. They should be delivered here to Trèfle 3 sometime in the afternoon. There'll be more about that tomorrow night. Until then …….
Evelyn, Matthew, Steven and Feargal
Today has been a fairly routine day with Steven doing more of the same kind of stuff – eating and drinking still featuring heavily as a highlight. His blood sugar is back within normal parameters so this might mean the welcome return of chocolate and cakes, as Steven was very quick to point out.
This was a chemo free day. However, the insulin and blood pressure medication did continue and a new product called cyclosporine was introduced. Cyclosporine is a very strong immunosuppressant drug which Steven will now need to take for the foreseeable future. Naturally, it has its own range of potentially awful side effects, but Steven seems to be tolerating it very well. It will operate to limit any negative response of the immune system towards the new stem cells, which could result in graft rejection.
Feargal arrived last night, as planned. It was great to see him as it seems like ages ago already since we left Brussels. When he arrived at the hospital at midday, I think he was a bit dubious about what Steven's condition might be, especially after he was instructed to don a sterile gown, hat, booties and face mask before he could enter the room. He was quite relieved to see that Steven is very much himself and really looking as healthy as ever. He took the afternoon shift with Steven at the hospital which freed up a few hours for Matthew and me. It was great for Steven to have a young person to keep him company for a change as I think he's beginning to be sick of the constant presence of one or other parent – or worse, both at the same time!
Tomorrow, of course, is 'D Day'. Apparently, the cord bloods are already here in the lab where various procedures need to be done to them before they are transfused. They should be delivered here to Trèfle 3 sometime in the afternoon. There'll be more about that tomorrow night. Until then …….
Evelyn, Matthew, Steven and Feargal
Tuesday, 26 June 2007
UPDATE 26th June
Hello Everyone,
Today's the last day for chemotherapy. Steven continues to do fine. His blood sugar is now coming down steadily and everything seems to be under control. He has developed a little bit of a cough, but they are not too concerned as they feel it's yet another side effect of the strong treatment regimen. They have taken multiple swabs for culturing just to be on the safe side and to rule out anything viral.
Professor Socié, who has been Steven's doctor for two years, has just visited with the head of clinic, Dr. Peffault de Latour. They were both in great form – I guess they have to be as I think a lot of the patients on Trèfle 3 are children. Socié was more interested in Steven's guitar than in discussing his medical status!
Days here are beginning to blend into each other. It feels a bit like time stands still once you walk through all the double doors to get in here. To pass the time, Steven spends a lot of the day on his computer as he is not allowed to use his mobile phone. He also enjoys using the PS3 games console, which I haven't tried yet but certainly looks really good. Since yesterday, we also have Wimbledon on the TV, but not much else of interest I'm afraid.
The highlight for today will be Feargal's arrival this evening. He will travel up on the Thalys and should be here by about 7:30pm.
Will update again tomorrow, hopefully.
Evelyn, Matthew and Steven
Today's the last day for chemotherapy. Steven continues to do fine. His blood sugar is now coming down steadily and everything seems to be under control. He has developed a little bit of a cough, but they are not too concerned as they feel it's yet another side effect of the strong treatment regimen. They have taken multiple swabs for culturing just to be on the safe side and to rule out anything viral.
Professor Socié, who has been Steven's doctor for two years, has just visited with the head of clinic, Dr. Peffault de Latour. They were both in great form – I guess they have to be as I think a lot of the patients on Trèfle 3 are children. Socié was more interested in Steven's guitar than in discussing his medical status!
Days here are beginning to blend into each other. It feels a bit like time stands still once you walk through all the double doors to get in here. To pass the time, Steven spends a lot of the day on his computer as he is not allowed to use his mobile phone. He also enjoys using the PS3 games console, which I haven't tried yet but certainly looks really good. Since yesterday, we also have Wimbledon on the TV, but not much else of interest I'm afraid.
The highlight for today will be Feargal's arrival this evening. He will travel up on the Thalys and should be here by about 7:30pm.
Will update again tomorrow, hopefully.
Evelyn, Matthew and Steven
Monday, 25 June 2007
DAYS 3 AND 4
MONDAY EVENING
I couldn't update the website last night as I couldn't get internet access, so this blog covers two evening's worth.
Thankfully, today has been very quiet and uneventful, so I will keep this update short.
Blood sugar is now very high as a result of the treatment, so Steven has had all his chocolates removed – he is not a happy camper about that! However, all other reactions to the medications seem to be under control, so that's very positive.
The head of the clinic did his rounds today and seemed to be quite pleased with how things are progressing. Steven now only has two more days of chemo, as Wednesday will be a medication free day before Thursday's graft.
Just as well Steven was brought up in Belgium and speaks fluent French. It would be very difficult to manage this situation as a patient without being able to communicate adequately. This is not like Belgium where all medical personnel seem to be multi-linguistic.
So, it's all good!
SUNDAY NIGHT
Hello Everyone,
We're now almost completing day 3 of the conditioning treatment.
Last night, Steven had a strong reaction to one of the medications administered to kill off all lymphocytes (white blood cells that help fight infection). His blood sugar had steadily risen during the day, as had his temperature and blood pressure. Halfway through his dinner he developed a slight headache which rapidly deteriorated into an excruciating one within minutes. When asked on a scale of 1 to 10, how he would rate the pain, Steven estimated a 7. I think he should have rated it higher as he was literally writhing in pain - unusual for him as he has always had a very high pain threshold, even during childhood. With rocketing blood pressure, he was immediately given strong painkillers and loxen (to reduce the pressure). We stayed at the hospital very late until eventually he fell asleep, but he did have a rough night.
Today, he has been much better and pain free. He's now had actrapid (insulin) and loxen added to his daily quotient. His nurse has just explained that his white cells have now dropped to only 200, down from 2,200 yesterday (4 - 10,000 is the normal range). It seems likely that a full re-sterilisation of his room will soon begin as his immune system has now been almost fully annihilated. He did quite a bit of sleeping this afternoon, probably because he missed out on sleep last night, but also because it is now quite normal to feel tired given this radical treatment combined with the sudden deterioration of his immunity.
This evening he is looking very bright, has eaten a huge dinner, and is getting full use out of his PS3, so all is well.
Will update soon,
Evelyn, Matthew and Steven
I couldn't update the website last night as I couldn't get internet access, so this blog covers two evening's worth.
Thankfully, today has been very quiet and uneventful, so I will keep this update short.
Blood sugar is now very high as a result of the treatment, so Steven has had all his chocolates removed – he is not a happy camper about that! However, all other reactions to the medications seem to be under control, so that's very positive.
The head of the clinic did his rounds today and seemed to be quite pleased with how things are progressing. Steven now only has two more days of chemo, as Wednesday will be a medication free day before Thursday's graft.
Just as well Steven was brought up in Belgium and speaks fluent French. It would be very difficult to manage this situation as a patient without being able to communicate adequately. This is not like Belgium where all medical personnel seem to be multi-linguistic.
So, it's all good!
SUNDAY NIGHT
Hello Everyone,
We're now almost completing day 3 of the conditioning treatment.
Last night, Steven had a strong reaction to one of the medications administered to kill off all lymphocytes (white blood cells that help fight infection). His blood sugar had steadily risen during the day, as had his temperature and blood pressure. Halfway through his dinner he developed a slight headache which rapidly deteriorated into an excruciating one within minutes. When asked on a scale of 1 to 10, how he would rate the pain, Steven estimated a 7. I think he should have rated it higher as he was literally writhing in pain - unusual for him as he has always had a very high pain threshold, even during childhood. With rocketing blood pressure, he was immediately given strong painkillers and loxen (to reduce the pressure). We stayed at the hospital very late until eventually he fell asleep, but he did have a rough night.
Today, he has been much better and pain free. He's now had actrapid (insulin) and loxen added to his daily quotient. His nurse has just explained that his white cells have now dropped to only 200, down from 2,200 yesterday (4 - 10,000 is the normal range). It seems likely that a full re-sterilisation of his room will soon begin as his immune system has now been almost fully annihilated. He did quite a bit of sleeping this afternoon, probably because he missed out on sleep last night, but also because it is now quite normal to feel tired given this radical treatment combined with the sudden deterioration of his immunity.
This evening he is looking very bright, has eaten a huge dinner, and is getting full use out of his PS3, so all is well.
Will update soon,
Evelyn, Matthew and Steven
Saturday, 23 June 2007
Trèfle 3
Dear Everyone,
We arrived in Paris early on Thursday afternoon, and by about 4pm, Steven was checked in and in his room. He has had some luck as his room is quite nice and has two full length windows with a view outside. Not all of the 16 rooms here have quite so much light, and the one Steven was originally shown during his induction visit was quite small, dark and oppressive.
It's funny how the practicalities of travel, getting organised and settling in somewhat normalised what we anticipated to be a difficult experience, to say the least.
Daily life here on Trèfle 3 has been quite uneventful so far, thank goodness. By Thursday night they were already administering zofran (which Steven fondly calls his anti-puke medicine). Friday morning saw the start of the chemo proper, along with liberal doses of antibiotic, anti-fungal, anti-viral medications and litres upon litres of fluid to flush out the toxins. This conditioning will continue until Steven's immune system becomes entirely depleted. Only then will his marrow be ready to be re-populated with his brand new stem cells which should then take over the work of creating a new immune system generating its own blood cells. The date now set for this cell graft is June 28th, which is next Thursday.
Steven has not yet felt even slightly nauseous. Instead he has been doing Olympic levels of eating. He claims that food becomes a highlight of the day in a reduced environment such as this. Long may his appetite last! Matthew and I have been cooking two hot meals a day and relaying them here to the hospital as the food here is really the darker side of awful. Surprising, when you consider how renowned Paris is for its fine food.
The staff in this unit are really wonderful - so helpful, with the ability to make almost everything sound positive.
In all, it's early days. It's important not to project too far into the days ahead as this is a very long road. My feeling is that every day free of nausea has got to be a bonus and we will handle problems only as they arise, not before. I am happy that at this moment Steven feels fine, is in good form, and that's just great!
Love to all,
Evelyn, Matthew and Steven
We arrived in Paris early on Thursday afternoon, and by about 4pm, Steven was checked in and in his room. He has had some luck as his room is quite nice and has two full length windows with a view outside. Not all of the 16 rooms here have quite so much light, and the one Steven was originally shown during his induction visit was quite small, dark and oppressive.
It's funny how the practicalities of travel, getting organised and settling in somewhat normalised what we anticipated to be a difficult experience, to say the least.
Daily life here on Trèfle 3 has been quite uneventful so far, thank goodness. By Thursday night they were already administering zofran (which Steven fondly calls his anti-puke medicine). Friday morning saw the start of the chemo proper, along with liberal doses of antibiotic, anti-fungal, anti-viral medications and litres upon litres of fluid to flush out the toxins. This conditioning will continue until Steven's immune system becomes entirely depleted. Only then will his marrow be ready to be re-populated with his brand new stem cells which should then take over the work of creating a new immune system generating its own blood cells. The date now set for this cell graft is June 28th, which is next Thursday.
Steven has not yet felt even slightly nauseous. Instead he has been doing Olympic levels of eating. He claims that food becomes a highlight of the day in a reduced environment such as this. Long may his appetite last! Matthew and I have been cooking two hot meals a day and relaying them here to the hospital as the food here is really the darker side of awful. Surprising, when you consider how renowned Paris is for its fine food.
The staff in this unit are really wonderful - so helpful, with the ability to make almost everything sound positive.
In all, it's early days. It's important not to project too far into the days ahead as this is a very long road. My feeling is that every day free of nausea has got to be a bonus and we will handle problems only as they arise, not before. I am happy that at this moment Steven feels fine, is in good form, and that's just great!
Love to all,
Evelyn, Matthew and Steven
Sunday, 17 June 2007
New Website
Dear All,
At last I have this website up and running. I am hoping that this is the most convenient way to let you all have the latest updates and stay in regular communication during what we expect to be a very difficult time.
As you may all know, Steven had to spend three weeks in hospital with pneumonia during May. This was following his return from Mauritius where he had gone with a group of his buddies to attend the wedding of a friend. This group have known each other since childhood and Steven could not pass up this opportunity for a 'fun time' in the tropics - who could blame him? Anyway, on his return he developed a temperature, severe back pain and a slight cough. Of course he was immediately hospitalised in Paris, placed in isolation and pumped full of antibiotics. This was all hugley frustrating for him and us as it was totally unforeseen. Steven lost 5 kilos in his first 4 days in hospital but has since made a remarkable recovery in every respect and has more than gained back his weight.
Last Monday, Matthew and I deposited both himself and Ellen (girlfriend) to our newly acquired appartment near the hospital in Paris. Steven had a week of several examinations and further medical tests in preparation for the transplant, and on Thursday had his central line placed. This line is like a tube inserted in the chest which will be used to administer medications and blood products during transplant. Sounds bad I know, but the discomfort has been decreasing on a daily basis. Yesterday (Saturday), Matthew and I returned to collect them both and came back home to Brussels.
The plan for next week is that Steve will be hospitalised on Thursday afternoon and the serious preparation (chemotherapy) for the transplant will begin soon after.
Steven remains (as always) in remarkably good spirits. He has very low immunity since the bout of pneumonia - which we try not to stress too much about - however, he does need to be really careful of all germs and bacteria. He is off to lunch today with Ellen and a group of his friends here in Brussels. His doctors have advised him that this is ok providing he wears his surgical face mask, is cautious about what he eats and avoids very crowded places.
That's all for the moment. Will update soon.
Evelyn
At last I have this website up and running. I am hoping that this is the most convenient way to let you all have the latest updates and stay in regular communication during what we expect to be a very difficult time.
As you may all know, Steven had to spend three weeks in hospital with pneumonia during May. This was following his return from Mauritius where he had gone with a group of his buddies to attend the wedding of a friend. This group have known each other since childhood and Steven could not pass up this opportunity for a 'fun time' in the tropics - who could blame him? Anyway, on his return he developed a temperature, severe back pain and a slight cough. Of course he was immediately hospitalised in Paris, placed in isolation and pumped full of antibiotics. This was all hugley frustrating for him and us as it was totally unforeseen. Steven lost 5 kilos in his first 4 days in hospital but has since made a remarkable recovery in every respect and has more than gained back his weight.
Last Monday, Matthew and I deposited both himself and Ellen (girlfriend) to our newly acquired appartment near the hospital in Paris. Steven had a week of several examinations and further medical tests in preparation for the transplant, and on Thursday had his central line placed. This line is like a tube inserted in the chest which will be used to administer medications and blood products during transplant. Sounds bad I know, but the discomfort has been decreasing on a daily basis. Yesterday (Saturday), Matthew and I returned to collect them both and came back home to Brussels.
The plan for next week is that Steve will be hospitalised on Thursday afternoon and the serious preparation (chemotherapy) for the transplant will begin soon after.
Steven remains (as always) in remarkably good spirits. He has very low immunity since the bout of pneumonia - which we try not to stress too much about - however, he does need to be really careful of all germs and bacteria. He is off to lunch today with Ellen and a group of his friends here in Brussels. His doctors have advised him that this is ok providing he wears his surgical face mask, is cautious about what he eats and avoids very crowded places.
That's all for the moment. Will update soon.
Evelyn
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