Dear all,
It's been a beautiful day here in Paris, which was wonderful, given the amount of time now spent walking the environs of the hospital. I think nearly all of the inmates of Trèfle 3 were turfed outside today to take in the fresh air – there were certainly many of them about – easily identifiable not just on the basis of familiarity but because they all wear 'the uniform' of gown, mask, bootees etc. Undoubtedly, they are all in fit enough condition to cope with being 'à l'extèrieur' for the moment. This, I feel, is undoubtedly a tribute to the success level and fantastic work done in this unit, which is truly a very unique and inspirational environment.
Today saw the return of Prof. Sociè to his rounds, following his two week holiday – it doesn't seem to have been long enough really. He reiterated to Steven the objective of having him discharged by the beginning of next week. The emphasis, according to him, is one of balance and this is never easy in the case of Fanconi anaemia. In his words, "cyclosporine and Fanconi anaemia just don't mix", and this is one of the eternal difficulties of transplant for this patient group – ie. the inability to cope with the high levels of toxicity induced by transplant drugs. Nonetheless, he feels that Steven is doing very well and that his high blood pressure and sugar will be stabilised.
Steven is now completely off intravenous drugs. All of his meds are now oral and his central line has been bandaged over. This line will be maintained until the 100 day mark, when ideally it is then removed. In the meantime it will be used for blood transfusions and during day clinic visits for the delivery of particular drugs and treatments. It is great that he is no longer hooked up to any drips or machines as it allows much greater freedom of movement.
Tomorrow will see the arrival of Ellen in early afternoon. Naturally, Steven is delighted and Matthew and I will benefit from more great company for the remainder of the week, and hear all the latest news from Bruxelles.
Love to all,
Evelyn, Matthew and Steven
Tuesday, 31 July 2007
Monday, 30 July 2007
DAY 33
Dear everyone,
Welcome back Auntie May, we missed you! Glad to hear Margaret is a little better, though still very delicate.
The beginning of a new week at St. Louis. Aideen left this afternoon and we really feel her absence – she's such good fun and company.
Steven was in really good form today. He was informed this morning that the results of his chimerism test shows 100% donor cells. This was obviously excellent news and everybody was mightily pleased. He still has cells from both cord bloods at roughly a 70/30% ratio, but as you may know, one of the cord bloods will eventually assume overall cell dominance.
He was also furnished with a booklet about what to expect from his daily life, once out of hospital. Steven had just started flicking through this, but has a positive attitude and is beginning to feel that things will be manageable. A lot of patients in this position become very nervous about being discharged into outside environments. They, naturally, feel very vulnerable and worry about coping without the 24 hour medical attention they have been receiving. Steven has concerns but not real fears of this order. I feel it's really good that he is beginning to feel self confident about the management of his current medical needs.
The exercise regimen continues unabated, with Steven gathering speed and strength daily. He already seems to be sprouting hair back onto his head and chin, which is initially appearing as a very fine bristle.
So, once again, we are happy to be able to report such positive news from Paris. Long may it continue!
Much love,
Evelyn, Matthew and Steven
Welcome back Auntie May, we missed you! Glad to hear Margaret is a little better, though still very delicate.
The beginning of a new week at St. Louis. Aideen left this afternoon and we really feel her absence – she's such good fun and company.
Steven was in really good form today. He was informed this morning that the results of his chimerism test shows 100% donor cells. This was obviously excellent news and everybody was mightily pleased. He still has cells from both cord bloods at roughly a 70/30% ratio, but as you may know, one of the cord bloods will eventually assume overall cell dominance.
He was also furnished with a booklet about what to expect from his daily life, once out of hospital. Steven had just started flicking through this, but has a positive attitude and is beginning to feel that things will be manageable. A lot of patients in this position become very nervous about being discharged into outside environments. They, naturally, feel very vulnerable and worry about coping without the 24 hour medical attention they have been receiving. Steven has concerns but not real fears of this order. I feel it's really good that he is beginning to feel self confident about the management of his current medical needs.
The exercise regimen continues unabated, with Steven gathering speed and strength daily. He already seems to be sprouting hair back onto his head and chin, which is initially appearing as a very fine bristle.
So, once again, we are happy to be able to report such positive news from Paris. Long may it continue!
Much love,
Evelyn, Matthew and Steven
Sunday, 29 July 2007
DAY 32
I'm really sorry that I didn't get to write the blog last night. By the time we arrived back from the hospital it was just so late and we still had to eat. Steven's promenade after dinner tends to delay things – but, of course, we have absolutely no complaints about that! I hope nobody was unnecessarily worried about the absence of news.
Steven continues to do really well. He is exercising as much as he can and really enjoying his food. A very tired Dr. de Latour (who apparently was up all night on call) told us today that they are still pleased, despite elevated kidney and liver levels. They suspect some slight GVHD in the liver, but feel this is normal enough for this point in time and nothing to really worry about. The corticosteroids will be reduced next week and this should impact his blood pressure level positively. Insulin levels are still being adapted and Steven is now self-injecting. It is envisaged that his release will be round about tomorrow week.
Yannick (he of the eyebrow piercings) has been on duty for several days now. He is quite amusing as it's a bit like watching 'your average bloke' turn his hand to nursing. I can only imagine that Yannick's life must be fully of minor mishaps as the word 'oops' emerges from his mouth with such great alacrity. The stories we could tell. The important thing is that Steven finds him good company and really trusts his medical skills.
Yesterday, Yannick announced that Steven has a new microbe in his central line. Several flourishes of activity later, it is felt that all is under control and this, apparently, is not the same bug as before. We strongly hope that this is the case and that there will be no further surgical replacements of the central line.
That's about all for the moment. The weekend has been quiet, as usual, in the hospital.
Love to all,
Evelyn, Matthew, Steven and Aideen
Steven continues to do really well. He is exercising as much as he can and really enjoying his food. A very tired Dr. de Latour (who apparently was up all night on call) told us today that they are still pleased, despite elevated kidney and liver levels. They suspect some slight GVHD in the liver, but feel this is normal enough for this point in time and nothing to really worry about. The corticosteroids will be reduced next week and this should impact his blood pressure level positively. Insulin levels are still being adapted and Steven is now self-injecting. It is envisaged that his release will be round about tomorrow week.
Yannick (he of the eyebrow piercings) has been on duty for several days now. He is quite amusing as it's a bit like watching 'your average bloke' turn his hand to nursing. I can only imagine that Yannick's life must be fully of minor mishaps as the word 'oops' emerges from his mouth with such great alacrity. The stories we could tell. The important thing is that Steven finds him good company and really trusts his medical skills.
Yesterday, Yannick announced that Steven has a new microbe in his central line. Several flourishes of activity later, it is felt that all is under control and this, apparently, is not the same bug as before. We strongly hope that this is the case and that there will be no further surgical replacements of the central line.
That's about all for the moment. The weekend has been quiet, as usual, in the hospital.
Love to all,
Evelyn, Matthew, Steven and Aideen
Friday, 27 July 2007
DAY 30
Dear all,
It's somewhat later than usual finally sitting down to write this evening, so again I will be brief.
Feargal departed and Aideen arrived as planned this evening. It's really great to have her company over this weekend. Aideen and I did the dinner run this evening which meant we were in the hospital roughly from 6 to 8:40pm. Like all other visitors, Aideen was surprised to see how well, lively, and very much himself, Steven actually is. We had planned to do the grand tour around the hospital and grounds (sightseeing of a very different kind for the visitor!) but in the end we didn't get to do this. As Steven's haemoglobin level was fairly low he was in the process of receiving two bags of blood, which couldn't be interrupted for strolling purposes. His blood pressure has also been quite high today, so the intravenous delivery of the blood had to be slowed down to avoid raising his pressure any further, and he had to be closely monitored during this procedure. Although he missed out on his evening run, he had spent a good deal of time outside with Feargal this afternoon and on the exercise bike, so all is well.
Today, Steven's blood count was 3,600 for white cells. His platelets are also quite low at the moment, so he will receive a platelet transfusion tomorrow.
Steven's medications are now taken almost 100% orally. They are trying hard to get his blood sugar and blood pressure stabilised and manageable in preparation for his exit from hospital. The feeling is that once these are under control, then it will be release time. Steven is already cruising the perimeter fence and the gates, preparing for his escape - really!
Have a lovely weekend, one and all,
Evelyn, Matthew, Steven and Aideen
It's somewhat later than usual finally sitting down to write this evening, so again I will be brief.
Feargal departed and Aideen arrived as planned this evening. It's really great to have her company over this weekend. Aideen and I did the dinner run this evening which meant we were in the hospital roughly from 6 to 8:40pm. Like all other visitors, Aideen was surprised to see how well, lively, and very much himself, Steven actually is. We had planned to do the grand tour around the hospital and grounds (sightseeing of a very different kind for the visitor!) but in the end we didn't get to do this. As Steven's haemoglobin level was fairly low he was in the process of receiving two bags of blood, which couldn't be interrupted for strolling purposes. His blood pressure has also been quite high today, so the intravenous delivery of the blood had to be slowed down to avoid raising his pressure any further, and he had to be closely monitored during this procedure. Although he missed out on his evening run, he had spent a good deal of time outside with Feargal this afternoon and on the exercise bike, so all is well.
Today, Steven's blood count was 3,600 for white cells. His platelets are also quite low at the moment, so he will receive a platelet transfusion tomorrow.
Steven's medications are now taken almost 100% orally. They are trying hard to get his blood sugar and blood pressure stabilised and manageable in preparation for his exit from hospital. The feeling is that once these are under control, then it will be release time. Steven is already cruising the perimeter fence and the gates, preparing for his escape - really!
Have a lovely weekend, one and all,
Evelyn, Matthew, Steven and Aideen
Thursday, 26 July 2007
DAY 29
Hello everyone,
Four weeks ago today, Steven was receiving his stem cells, feeling physically exhausted and sleeping virtually around the clock. He has come so far and negotiated so many hurdles in this short space of time, it is truly incredible.
Steven had Feargal's good company all afternoon today. There was a new game for the PS3 which Feargal had bought in Brussels and was good for some amusement. They also spent a considerable amount of time walking the hallways, foyer and grounds together. Feargal was as excited as the rest of us to be able to go outside with Steven. It just seems such a big step towards regaining health.
This morning Steven began being injected with insulin via an insulin pen. The actrapid insulin which he had been receiving daily has now also been removed from intravenous delivery. At the moment he is getting three shots daily and has to have regular checks on his sugar level. It's a matter of keeping a good balance between the blood sugar and insulin intake. The whole process is as painless as it can be, but the fact that it has to be done so frequently makes it rather tedious. Steven is not too bothered by the process itself, but dislikes having to keep a careful eye on what he eats. Currently, his diet has sugar and salt restrictions – no chocolate mousse or ice cream allowed for the moment at least! Hopefully when the corticosteroids are reduced in the long term, his body will return to being able to process sugar normally.
Steven's mind is now turning more and more towards what happens after he gets out of hospital. He is really delighted that his release is now looking like a definite plan for the near future. He understands, however, that his daily life will remain curtailed in many respects. Even with a very decent white cell count, he will still be susceptible to infection while he continues taking immunosuppressants. Even given a fully reconstituted immune system, his body's natural immunities will be quite infantile and his defences will need to be gradually built up over time. For example, Steven will eventually need to receive all of his vaccinations again as these will have all been obliterated during his transplant conditioning. Things will have to be paced quite slowly initially and I think it is going to be very hard for Steven to accept this aspect of his recuperation. However, as we all know, throughout this whole experience Steven has been nothing if not intrepid and he has learned that determination paves the way toward success – so, onwards and upwards as they say!
Today, Steven's white cells were 3,800, with haemoglobin of 8.3. Platelets were low, so they were preparing a transfusion for either later today or tomorrow.
Feargal will return to Brussels tomorrow evening but will be replaced by my wonderful niece Aideen who is coming for the weekend to entertain us. No pressure Aideen!
Love to all,
Evelyn, Matthew, Steven and Feargal
Four weeks ago today, Steven was receiving his stem cells, feeling physically exhausted and sleeping virtually around the clock. He has come so far and negotiated so many hurdles in this short space of time, it is truly incredible.
Steven had Feargal's good company all afternoon today. There was a new game for the PS3 which Feargal had bought in Brussels and was good for some amusement. They also spent a considerable amount of time walking the hallways, foyer and grounds together. Feargal was as excited as the rest of us to be able to go outside with Steven. It just seems such a big step towards regaining health.
This morning Steven began being injected with insulin via an insulin pen. The actrapid insulin which he had been receiving daily has now also been removed from intravenous delivery. At the moment he is getting three shots daily and has to have regular checks on his sugar level. It's a matter of keeping a good balance between the blood sugar and insulin intake. The whole process is as painless as it can be, but the fact that it has to be done so frequently makes it rather tedious. Steven is not too bothered by the process itself, but dislikes having to keep a careful eye on what he eats. Currently, his diet has sugar and salt restrictions – no chocolate mousse or ice cream allowed for the moment at least! Hopefully when the corticosteroids are reduced in the long term, his body will return to being able to process sugar normally.
Steven's mind is now turning more and more towards what happens after he gets out of hospital. He is really delighted that his release is now looking like a definite plan for the near future. He understands, however, that his daily life will remain curtailed in many respects. Even with a very decent white cell count, he will still be susceptible to infection while he continues taking immunosuppressants. Even given a fully reconstituted immune system, his body's natural immunities will be quite infantile and his defences will need to be gradually built up over time. For example, Steven will eventually need to receive all of his vaccinations again as these will have all been obliterated during his transplant conditioning. Things will have to be paced quite slowly initially and I think it is going to be very hard for Steven to accept this aspect of his recuperation. However, as we all know, throughout this whole experience Steven has been nothing if not intrepid and he has learned that determination paves the way toward success – so, onwards and upwards as they say!
Today, Steven's white cells were 3,800, with haemoglobin of 8.3. Platelets were low, so they were preparing a transfusion for either later today or tomorrow.
Feargal will return to Brussels tomorrow evening but will be replaced by my wonderful niece Aideen who is coming for the weekend to entertain us. No pressure Aideen!
Love to all,
Evelyn, Matthew, Steven and Feargal
Wednesday, 25 July 2007
DAY 28
Okay, it's a bit later this evening. Feargal arrived and we had to entertain him for a bit and find out all the latest from Bruxelles, so I am delayed 'in a good way' at getting to the daily communication. His knee is much better, by the way.
Steven was again in very good health and form today. His news of the day was that he was now allowed into the 'great outdoors'. This meant that we had two separate half hour periods, in which we patrolled the grounds of St. Louis. Luckily, today was a beautiful sunny day and there is a very pretty courtyard in the hospital which dates from 1607 (they celebrated their 400th centenary in May), so it was a nice stroll. Steven was incredibly appreciative of the fact that he was outdoors in the air and sunshine. It's amazing how deprivation makes us so aware of what we normally, daily, take for granted. He did this, all cloaked from head to toe, of course, but it still felt 'so' good. He is amazingly strong on his feet. Most of the other patients I have seen make preliminary excursions from Trèfle have done so in wheelchairs, at least initially.
Matthew and I met with Dr. de Latour this evening. He is just such a nice guy! He had preliminary results from the chimera test – just received on his computer – as he proudly declared – Steven's cells are donor cells. He cannot tell the precise percentage yet and neither could he identify from which cord blood source, but he was quite excited. He feels that to have 4,000 white cells so early from cord blood is fantastic. According to him, the haemoglobin and the platelets will come in much later. Red cells take at least 21 days to mature from their genesis, so he has no worries. He is envisaging a hospital release for about Friday week, it all continues well. He also stressed the point that 'exercise is key' from here on. Steven may need to rely on insulin for the period of time he is on corticosteroids, and his kidneys need monitoring. There are no major worries regarding the 'red hand' problem.
So, it all continues to be good.
With love, especially to the Carroll family.
Evelyn, Matthew, Steven and Feargal
Steven was again in very good health and form today. His news of the day was that he was now allowed into the 'great outdoors'. This meant that we had two separate half hour periods, in which we patrolled the grounds of St. Louis. Luckily, today was a beautiful sunny day and there is a very pretty courtyard in the hospital which dates from 1607 (they celebrated their 400th centenary in May), so it was a nice stroll. Steven was incredibly appreciative of the fact that he was outdoors in the air and sunshine. It's amazing how deprivation makes us so aware of what we normally, daily, take for granted. He did this, all cloaked from head to toe, of course, but it still felt 'so' good. He is amazingly strong on his feet. Most of the other patients I have seen make preliminary excursions from Trèfle have done so in wheelchairs, at least initially.
Matthew and I met with Dr. de Latour this evening. He is just such a nice guy! He had preliminary results from the chimera test – just received on his computer – as he proudly declared – Steven's cells are donor cells. He cannot tell the precise percentage yet and neither could he identify from which cord blood source, but he was quite excited. He feels that to have 4,000 white cells so early from cord blood is fantastic. According to him, the haemoglobin and the platelets will come in much later. Red cells take at least 21 days to mature from their genesis, so he has no worries. He is envisaging a hospital release for about Friday week, it all continues well. He also stressed the point that 'exercise is key' from here on. Steven may need to rely on insulin for the period of time he is on corticosteroids, and his kidneys need monitoring. There are no major worries regarding the 'red hand' problem.
So, it all continues to be good.
With love, especially to the Carroll family.
Evelyn, Matthew, Steven and Feargal
Tuesday, 24 July 2007
DAY 27
Well, the new central line is in place and all went well with the procedure. It was somewhat delayed, with Steven eventually being brought down at around 1:00pm. This was not a problem in itself, but, as he had to fast from midnight last night, there were some hunger pangs to be endured. The line appears to be not quite as sore as the first time it was placed, so that's a relief.
Steven had a very interrupted night's sleep last night due to an over zealous new nurse who wanted to be constantly checking and switching on bright lights in the middle of the night. This combined with the aftermath of today's anaesthetic meant that he was quite fatigued this afternoon and slept quite a lot. By dinner time, things were back to normal. He spent some time cycling, had a good dinner and was planning on scouting around the corridors outside of Trèfle later on with Matthew.
Cyclosporine was reintroduced today as an oral medication. They feel his system has been well rested from its removal in intravenous form, so he can now tolerate this lower dosage format. The majority of the medication now has to be consumed as either as tablets or medicine, and it's a considerable amount.
Blood counts came in at 4000 for the white cells and 8.9 for haemoglobin. There is still no sign of a result from the chimera test. Steven's hands are still very red and are now peeling. This is being viewed as a mild form of graft versus host disease, and there is constant checking for any further signs.
Feargal will return tomorrow night for another day or two. Although it's not too inconvenient to travel to Paris from Brussels on the Thalys, it's been really great of Feargal to be so supportive. It hasn't been the ideal summer for him in many respects, but he hasn't complained and has managed very well to keep things ticking over in the house – there's been an awful lot of grass cutting and pool cleaning to be done 'tout seul'!
Still thinking of the Carroll family and Auntie Margaret……
Love,
Evelyn, Matthew and Steven
Steven had a very interrupted night's sleep last night due to an over zealous new nurse who wanted to be constantly checking and switching on bright lights in the middle of the night. This combined with the aftermath of today's anaesthetic meant that he was quite fatigued this afternoon and slept quite a lot. By dinner time, things were back to normal. He spent some time cycling, had a good dinner and was planning on scouting around the corridors outside of Trèfle later on with Matthew.
Cyclosporine was reintroduced today as an oral medication. They feel his system has been well rested from its removal in intravenous form, so he can now tolerate this lower dosage format. The majority of the medication now has to be consumed as either as tablets or medicine, and it's a considerable amount.
Blood counts came in at 4000 for the white cells and 8.9 for haemoglobin. There is still no sign of a result from the chimera test. Steven's hands are still very red and are now peeling. This is being viewed as a mild form of graft versus host disease, and there is constant checking for any further signs.
Feargal will return tomorrow night for another day or two. Although it's not too inconvenient to travel to Paris from Brussels on the Thalys, it's been really great of Feargal to be so supportive. It hasn't been the ideal summer for him in many respects, but he hasn't complained and has managed very well to keep things ticking over in the house – there's been an awful lot of grass cutting and pool cleaning to be done 'tout seul'!
Still thinking of the Carroll family and Auntie Margaret……
Love,
Evelyn, Matthew and Steven
Monday, 23 July 2007
DAY 26
Dear everyone,
Monday, the start of another busy week. It's amazing how animated the hospital is during the week in comparison to the weekend. What I call the 'perfusion (drip) population' in the lobby really proliferates on weekdays. I don't know if this a feature of modern medicine or a St. Louis thing, but nearly everybody down there is attached to a drip of some kind, wandering about the hospital ground floor, and outside in the courtyard. I suppose it saves a bit of space and avoids some tedium for the patients at the same time.
The good news from de Latour is that, providing all continues to go well and proceeds as planned, they may discharge Steven from Trèfle within ten days to two weeks. Following release, he will have to remain in Paris, of course, and check in to the haematology clinic every second day. Needless to say, Steven was in really good form as a result of this decree! He decided to emerge from the room and go for a walk (more like a gallop I would say) around the corridors. I was very impressed that he did so well on his feet – very steady and energetic – really not like a post transplant patient at all. For his next excursion he will be allowed outside of the transplant unit, and maybe even outdoors. He can certainly join the wandering throng in the lobby.
The blood counts were good. White cells came in at 4,300, with neutrophils at 3,800 and haemoglobin at 9.8. We are approaching the time when they will want to see a rise and maintenance of the haemoglobin and particularly the platelet level. Platelets are the components in blood that enable coagulation. These cells have a very short lifespan and are the last to stabilise following transplant. Steven will have a platelet transfusion later tonight as he is having his central line re-implanted tomorrow morning at around 10am. This means another trip to the operating theatre (platelets essential) and some discomfort afterwards. In fact, Steven will be glad to have this done as he finds the drip attached to his hand very cumbersome.
We are all sorry to hear that Aunt Margaret (Matthew's father's sister) is feeling poorly. We will be thinking of Margaret and all of the Carroll family during this difficult time.
With love,
Evelyn, Matthew and Steven
Monday, the start of another busy week. It's amazing how animated the hospital is during the week in comparison to the weekend. What I call the 'perfusion (drip) population' in the lobby really proliferates on weekdays. I don't know if this a feature of modern medicine or a St. Louis thing, but nearly everybody down there is attached to a drip of some kind, wandering about the hospital ground floor, and outside in the courtyard. I suppose it saves a bit of space and avoids some tedium for the patients at the same time.
The good news from de Latour is that, providing all continues to go well and proceeds as planned, they may discharge Steven from Trèfle within ten days to two weeks. Following release, he will have to remain in Paris, of course, and check in to the haematology clinic every second day. Needless to say, Steven was in really good form as a result of this decree! He decided to emerge from the room and go for a walk (more like a gallop I would say) around the corridors. I was very impressed that he did so well on his feet – very steady and energetic – really not like a post transplant patient at all. For his next excursion he will be allowed outside of the transplant unit, and maybe even outdoors. He can certainly join the wandering throng in the lobby.
The blood counts were good. White cells came in at 4,300, with neutrophils at 3,800 and haemoglobin at 9.8. We are approaching the time when they will want to see a rise and maintenance of the haemoglobin and particularly the platelet level. Platelets are the components in blood that enable coagulation. These cells have a very short lifespan and are the last to stabilise following transplant. Steven will have a platelet transfusion later tonight as he is having his central line re-implanted tomorrow morning at around 10am. This means another trip to the operating theatre (platelets essential) and some discomfort afterwards. In fact, Steven will be glad to have this done as he finds the drip attached to his hand very cumbersome.
We are all sorry to hear that Aunt Margaret (Matthew's father's sister) is feeling poorly. We will be thinking of Margaret and all of the Carroll family during this difficult time.
With love,
Evelyn, Matthew and Steven
Sunday, 22 July 2007
DAY 25
This is going to have to be very brief again. I'm afraid we got very absorbed in the Carnoustie British Open on TV in Steven's room. As a result we are both quite late back from the hospital and still have to get our supper 'on the boil'. That was a great performance by Padraig Harrington (makes me want to brandish my golf clubs again!), but boy did he wring out our nerves on those 18th holes. Wonderful to see the Irish win as it seems to happen so rarely!
Steven is really doing well at the moment and is beginning to adopt the appearance of someone 'lounging around'. He is feeling much better since the withdrawal of the cyclosporine. His legs are now fine and he is putting in a fair bit of exertion on the exercise bike. He is considering going 'walkabout' in the corridors but wants to wait for the results of the chimera test to feel really confident about this. The hands are still very red. His appetite and eating are both very healthy. Matthew and I hope to see Dr. de Latour tomorrow to discuss the medication situation and just get a general update. We had no blood results today as whichever doctor was on duty didn't record them – Steven had never seen her before and didn't get the name. We wait and hope that tomorrow's results and feedback will all be positive.
We hope you all had a good weekend.
Love always,
Evelyn, Matthew and Steven
Steven is really doing well at the moment and is beginning to adopt the appearance of someone 'lounging around'. He is feeling much better since the withdrawal of the cyclosporine. His legs are now fine and he is putting in a fair bit of exertion on the exercise bike. He is considering going 'walkabout' in the corridors but wants to wait for the results of the chimera test to feel really confident about this. The hands are still very red. His appetite and eating are both very healthy. Matthew and I hope to see Dr. de Latour tomorrow to discuss the medication situation and just get a general update. We had no blood results today as whichever doctor was on duty didn't record them – Steven had never seen her before and didn't get the name. We wait and hope that tomorrow's results and feedback will all be positive.
We hope you all had a good weekend.
Love always,
Evelyn, Matthew and Steven
Saturday, 21 July 2007
DAY 24
A very quiet Saturday in all respects, but Steven did have a visit from Alex Vlaanderen this afternoon. Alex is a longstanding childhood friend who can boast that he's 50% Irish, with a mother from Waterford of all places - bound to be a great guy, really! That was very nice for Steven and really helped break the monotony of the weekend for him.
Overall, Steven was feeling better and in good form today. Partly this was owing to the fact that he had a good night's sleep. His legs felt better and he spent two sessions on the exercise bike (yes, Nicholas, you heard that correctly!). His chest is not too sore from yesterday's surgery. It would appear that the removal of the central line is less painful than its placement – which makes total sense. Sandrine informed us that the need for total sterility is now replaced by the need to be just very clean (ie. no need to sterilise food, clothing etc.). The white cell count today was a little down at 3,600. Sandrine ascribes this to the normal yo-yo effect of counts post transplant.
That's about all that's happening at the minute, so I will keep things short tonight.
Love to all,
Evelyn, Matthew and Steven
Overall, Steven was feeling better and in good form today. Partly this was owing to the fact that he had a good night's sleep. His legs felt better and he spent two sessions on the exercise bike (yes, Nicholas, you heard that correctly!). His chest is not too sore from yesterday's surgery. It would appear that the removal of the central line is less painful than its placement – which makes total sense. Sandrine informed us that the need for total sterility is now replaced by the need to be just very clean (ie. no need to sterilise food, clothing etc.). The white cell count today was a little down at 3,600. Sandrine ascribes this to the normal yo-yo effect of counts post transplant.
That's about all that's happening at the minute, so I will keep things short tonight.
Love to all,
Evelyn, Matthew and Steven
Friday, 20 July 2007
DAY 23
Dear everyone,
Friday already! I don't know where this week went, but we seemed to have moved from Monday to Friday very quickly. I'm not sure Steven would see it this way.
Sandrine was back from her summer holidays today. It's always nice to have her on duty as she is always bright and cheerful. The nurses here seem to do twelve hour shifts over three consecutive days and then are off for the rest of the week. They do try to allocate the same nurse to each patient as much as possible, which is nice.
It was announced this morning that they were going to go ahead with the central line change. De Latour explained that they were finding it difficult to kill off the bacteria in the line and that it was better to remove it as a precautionary measure. The danger was always that it might find its way into the blood. This meant a trip to the operating theatre this afternoon. Steven is a little sore this evening as the local anaesthetic wears off. The plan is to reinsert a new line on Monday or Tuesday. This entails taking a 30cm line in through the jugular vein just under the collar bone and out through the chest where the line surfaces. It's not a dangerous procedure, just invasive, and it takes time to heal.
The white cells today were 3,900. Steven still has a lot of discomfort in his legs which he now describes as muscle spasms. De Latour continues to feel that everything is going very well and he is not worried about the balance of medications nor the control of their side effects. The result of the chimera test should be with us by Monday.
Thanks for the update on the kennel situation, Ellen. I just wonder, at this point, how many dogs Peter keeps in his 'living room' - or is this just a euphemism for 'big shed'? I also notice he has new doggy pictures adorning his website, featuring Sam. Hopefully this is the beginning of a beautiful relationship between Archie and Sam!
Love to all,
Evelyn, Matthew and Steven
Friday already! I don't know where this week went, but we seemed to have moved from Monday to Friday very quickly. I'm not sure Steven would see it this way.
Sandrine was back from her summer holidays today. It's always nice to have her on duty as she is always bright and cheerful. The nurses here seem to do twelve hour shifts over three consecutive days and then are off for the rest of the week. They do try to allocate the same nurse to each patient as much as possible, which is nice.
It was announced this morning that they were going to go ahead with the central line change. De Latour explained that they were finding it difficult to kill off the bacteria in the line and that it was better to remove it as a precautionary measure. The danger was always that it might find its way into the blood. This meant a trip to the operating theatre this afternoon. Steven is a little sore this evening as the local anaesthetic wears off. The plan is to reinsert a new line on Monday or Tuesday. This entails taking a 30cm line in through the jugular vein just under the collar bone and out through the chest where the line surfaces. It's not a dangerous procedure, just invasive, and it takes time to heal.
The white cells today were 3,900. Steven still has a lot of discomfort in his legs which he now describes as muscle spasms. De Latour continues to feel that everything is going very well and he is not worried about the balance of medications nor the control of their side effects. The result of the chimera test should be with us by Monday.
Thanks for the update on the kennel situation, Ellen. I just wonder, at this point, how many dogs Peter keeps in his 'living room' - or is this just a euphemism for 'big shed'? I also notice he has new doggy pictures adorning his website, featuring Sam. Hopefully this is the beginning of a beautiful relationship between Archie and Sam!
Love to all,
Evelyn, Matthew and Steven
DAY 23
Dear everyone,
Friday already! I don't know where this week went, but we seemed to have moved from Monday to Friday very quickly. I'm not sure Steven would see it this way.
Sandrine was back from her summer holidays today. It's always nice to have her on duty as she is always bright and cheerful. The nurses here seem to do twelve hour shifts over three consecutive days and then are off for the rest of the week. They do try to allocate the same nurse to each patient as much as possible, which is nice.
It was announced this morning that they were going to go ahead with the central line change. De Latour explained that they were finding it difficult to kill off the bacteria in the line and that it was better to remove it as a precautionary measure. The danger was always that it might find its way into the blood. This meant a trip to the operating theatre this afternoon. Steven is a little sore this evening as the local anaesthetic wears off. The plan is to reinsert a new line on Monday or Tuesday. This entails taking a 30cm line in through the jugular vein just under the collar bone and out through the chest where the line surfaces. It's not a dangerous procedure, just invasive, and it takes time to heal.
The white cells today were 3,900. Steven still has a lot of discomfort in his legs which he now describes as muscle spasms. De Latour continues to feel that everything is going very well and he is not worried about the balance of medications nor the control of their side effects. The result of the chimera test should be with us by Monday.
Thanks for the update on the kennel situation, Ellen. I just wonder, at this point, how many dogs Peter keeps in his 'living room' - or is this just a euphemism for 'big shed'? I also notice he has new doggy pictures adorning his website, featuring Sam. Hopefully this is the beginning of a beautiful relationship between Archie and Sam!
Love to all,
Evelyn, Matthew and Steven
Friday already! I don't know where this week went, but we seemed to have moved from Monday to Friday very quickly. I'm not sure Steven would see it this way.
Sandrine was back from her summer holidays today. It's always nice to have her on duty as she is always bright and cheerful. The nurses here seem to do twelve hour shifts over three consecutive days and then are off for the rest of the week. They do try to allocate the same nurse to each patient as much as possible, which is nice.
It was announced this morning that they were going to go ahead with the central line change. De Latour explained that they were finding it difficult to kill off the bacteria in the line and that it was better to remove it as a precautionary measure. The danger was always that it might find its way into the blood. This meant a trip to the operating theatre this afternoon. Steven is a little sore this evening as the local anaesthetic wears off. The plan is to reinsert a new line on Monday or Tuesday. This entails taking a 30cm line in through the jugular vein just under the collar bone and out through the chest where the line surfaces. It's not a dangerous procedure, just invasive, and it takes time to heal.
The white cells today were 3,900. Steven still has a lot of discomfort in his legs which he now describes as muscle spasms. De Latour continues to feel that everything is going very well and he is not worried about the balance of medications nor the control of their side effects. The result of the chimera test should be with us by Monday.
Thanks for the update on the kennel situation, Ellen. I just wonder, at this point, how many dogs Peter keeps in his 'living room' - or is this just a euphemism for 'big shed'? I also notice he has new doggy pictures adorning his website, featuring Sam. Hopefully this is the beginning of a beautiful relationship between Archie and Sam!
Love to all,
Evelyn, Matthew and Steven
Thursday, 19 July 2007
DAY 22
There is nothing really new to report from today's happenings. It's been a fairly run of the mill type day. I guess that in itself should be appreciated – 'no news is good news' as the saying goes. The whole approach now is one of monitoring the existing situation and trying to avoid the development of any further complications. This is a complex task.
To begin with, Steven's white cells reached 4,500, which is into the normal range – yeah! There is really no point in quoting either his haemoglobin or his platelet (blood clotting factor) count as he has had transfusions of both these blood products very recently, so both will be quite high as a result. We have not yet received the result of the test for blood cell chimerism – this may arrive over the weekend.
Today he was taken off the cyclosporine (immunosuppressant) as this was the instigator of his leg pains, kidney insufficiency and high blood pressure. To compensate for its removal, his intake of corticosteroids has been increased. However, this creates its own problems as these added steroids will further impact his liver enzymes and high blood sugar. It has all become a very delicate balancing act. As you may know, since his transplant, Steven's blood pressure and blood sugar have been entirely controlled by medication, at a fairly high dosage level. I never cease to be amazed at the amount of strong drugs the body can absorb simultaneously and appear to tolerate. The variety of antibiotics alone is extensive – being pumped in every day, around the clock. It would seem to be an impossible feat of endurance.
Steve's hands are redder than ever and the doctorly debate over the degree of redness continues. My impression is that the cortisone cream has only agitated the existing problem. I really don't see the redness as a skin rash, it's really more of a redness that lies under the skin and is not superficial in any way. I can't really see how cortisone cream would help, but I suppose they know what they're doing.
Anyway, tomorrow is another day and hopefully another step along the road to recovery.
With love,
Evelyn, Matthew and Steven
To begin with, Steven's white cells reached 4,500, which is into the normal range – yeah! There is really no point in quoting either his haemoglobin or his platelet (blood clotting factor) count as he has had transfusions of both these blood products very recently, so both will be quite high as a result. We have not yet received the result of the test for blood cell chimerism – this may arrive over the weekend.
Today he was taken off the cyclosporine (immunosuppressant) as this was the instigator of his leg pains, kidney insufficiency and high blood pressure. To compensate for its removal, his intake of corticosteroids has been increased. However, this creates its own problems as these added steroids will further impact his liver enzymes and high blood sugar. It has all become a very delicate balancing act. As you may know, since his transplant, Steven's blood pressure and blood sugar have been entirely controlled by medication, at a fairly high dosage level. I never cease to be amazed at the amount of strong drugs the body can absorb simultaneously and appear to tolerate. The variety of antibiotics alone is extensive – being pumped in every day, around the clock. It would seem to be an impossible feat of endurance.
Steve's hands are redder than ever and the doctorly debate over the degree of redness continues. My impression is that the cortisone cream has only agitated the existing problem. I really don't see the redness as a skin rash, it's really more of a redness that lies under the skin and is not superficial in any way. I can't really see how cortisone cream would help, but I suppose they know what they're doing.
Anyway, tomorrow is another day and hopefully another step along the road to recovery.
With love,
Evelyn, Matthew and Steven
Wednesday, 18 July 2007
DAY 21
Hello all,
Steven will be in the hospital four weeks tomorrow. In some ways this seems like a short period; in other ways, it feels like it's been this way forever. It's hard to describe, but the time spent appears largely unquantifiable, possibly because the everyday milestones are completely different and also the fact that so many profound experiences have occurred in this place that is so alien to the normal mundane environment.
Steven was looking a little bit weary today. He hadn't slept well last night and the leg pains are becoming rather draining despite the best efforts at pain control. Nonetheless, he did do 5 kilometres on the exercise bike, which is a good start to rehabilitating some degree of energy and physical activity. The drip line attached to his hand is also somewhat irritating as it is so much more 'in the way' than the central line. Many of the oral meds also taste really vile – these are the ones that are too toxic to be fed through the vein in the hand.
White cells were at 3,700 today, while the haemoglobin count had dropped a little to 8.3. This resulted in a transfusion this afternoon. We are still waiting for the results of the chimera blood test which should be available very soon.
The doctors' perception this morning was that the palms are slightly less red. He has been supplied with cortisone cream to battle this problem.
We received two beautiful hand crafted cards from Nora and Joanna (Steven's littlest cousins) this morning. I managed to attach them to the outside of the small glass pane, under the blinds, on Steven's room door, where he can see them clearly. Such great works of art and loving wishes deserve a place of prominence despite the fact that Steven is not allowed cards inside his room.
Feargal hobbled back to Brussels this evening. The discomfort in his knee has lessened but is still present. I'm sure it will be better soon.
That's all for now,
Evelyn, Matthew and Steven
Steven will be in the hospital four weeks tomorrow. In some ways this seems like a short period; in other ways, it feels like it's been this way forever. It's hard to describe, but the time spent appears largely unquantifiable, possibly because the everyday milestones are completely different and also the fact that so many profound experiences have occurred in this place that is so alien to the normal mundane environment.
Steven was looking a little bit weary today. He hadn't slept well last night and the leg pains are becoming rather draining despite the best efforts at pain control. Nonetheless, he did do 5 kilometres on the exercise bike, which is a good start to rehabilitating some degree of energy and physical activity. The drip line attached to his hand is also somewhat irritating as it is so much more 'in the way' than the central line. Many of the oral meds also taste really vile – these are the ones that are too toxic to be fed through the vein in the hand.
White cells were at 3,700 today, while the haemoglobin count had dropped a little to 8.3. This resulted in a transfusion this afternoon. We are still waiting for the results of the chimera blood test which should be available very soon.
The doctors' perception this morning was that the palms are slightly less red. He has been supplied with cortisone cream to battle this problem.
We received two beautiful hand crafted cards from Nora and Joanna (Steven's littlest cousins) this morning. I managed to attach them to the outside of the small glass pane, under the blinds, on Steven's room door, where he can see them clearly. Such great works of art and loving wishes deserve a place of prominence despite the fact that Steven is not allowed cards inside his room.
Feargal hobbled back to Brussels this evening. The discomfort in his knee has lessened but is still present. I'm sure it will be better soon.
That's all for now,
Evelyn, Matthew and Steven
Tuesday, 17 July 2007
DAY 20
It was apparent soon after Feargal's arrival yesterday that he was limping around the house. A minor accident on a friend's mountain bike last Saturday resulted in a bad knock to his leg. Feargal thought his leg was fine but by last night it was quite swollen around the knee. The end result of this was a morning spent in Urgences (casualty) in St. Louis. Several examinations and an x ray later, they announced that there was no serious damage: he just needs a bandage and to rest it for a few days. Relief all round, as you can imagine! Urgences in St. Louis is a bit of an experience as it's mostly populated by 'sans abri' (the homeless) in various states of inebriation and disrepair. To balance this out, they have high levels of security – tough looking guys who look like bouncers and maintain a watchful presence. The 10th arrondissement in Paris is not the most salubrious area!
Another good day for Steven - looking fine and feeling fit! As regards the latter, he has now been advised to partake of some exercise, either on the exercise bike in his room, or, a few rounds of the corridor. This is an offer he is, so far, resisting.
A lot of the intravenous drugs are now being replaced by oral meds. The pain in his legs is a little better today, so the morphine booster has been withdrawn completely.
The problem of the day was the discovery that he still has bacteria in his central line. They have now removed the drip line attached to the central line, fed a dose of antibiotics directly into the central line, and have now inserted the drip line into his hand. This is not as comfortable as the central line and also limits movement to a greater degree. This will last for a few days. If the bacteria does not clear up, then they will need to re-do the entire central line, which has now totally healed into his chest, to rule out infection getting into his blood and system. Hopefully this will be avoided.
Steven's red palms continue to be a source of constant attention. The dermatologist now attends with de Latour on a daily basis and everyone concerned seems to have a different opinion of which hand is the reddest and whether that hand is paler or redder than the previous day.
White cells were at 4,200 today, but we are not wholly confident with the accuracy of that result. It seems a little bizarre. We'll see.
Steven remains hugely unconcerned by all of this and focuses on just getting about his daily business and staying comfortable. Nerves of steel!
Love to all,
Evelyn, Matthew, Steven and Feargal
Another good day for Steven - looking fine and feeling fit! As regards the latter, he has now been advised to partake of some exercise, either on the exercise bike in his room, or, a few rounds of the corridor. This is an offer he is, so far, resisting.
A lot of the intravenous drugs are now being replaced by oral meds. The pain in his legs is a little better today, so the morphine booster has been withdrawn completely.
The problem of the day was the discovery that he still has bacteria in his central line. They have now removed the drip line attached to the central line, fed a dose of antibiotics directly into the central line, and have now inserted the drip line into his hand. This is not as comfortable as the central line and also limits movement to a greater degree. This will last for a few days. If the bacteria does not clear up, then they will need to re-do the entire central line, which has now totally healed into his chest, to rule out infection getting into his blood and system. Hopefully this will be avoided.
Steven's red palms continue to be a source of constant attention. The dermatologist now attends with de Latour on a daily basis and everyone concerned seems to have a different opinion of which hand is the reddest and whether that hand is paler or redder than the previous day.
White cells were at 4,200 today, but we are not wholly confident with the accuracy of that result. It seems a little bizarre. We'll see.
Steven remains hugely unconcerned by all of this and focuses on just getting about his daily business and staying comfortable. Nerves of steel!
Love to all,
Evelyn, Matthew, Steven and Feargal
Monday, 16 July 2007
DAY 19
Well, the moment we had been waiting for arrived – the 'iron curtain' has been lifted and Steven is once again wholly visible. Word had it this morning that they were going to remove the total isolation restriction today. Matthew was doing the lunch run and they told him they would wait until 'the mammy' arrived before the grand dénoument would occur. At about 3:20, two nurses came in to ceremoniously unveil Steven. Now those of you who know Steven best will understand that he treasures the knack of looking completely underwhelmed during what should be key moments in his life. Today was no exception, although he did manage a subtle wave. Naturally, I was excited enough for both of us. Such a small thing on the face of it, but really huge if you've been living entirely in that small enclosure for nearly three weeks.
Blood counts remain good today. The white cells came in at 2,500. This is a decline, but they believe that there had been an error (it sometimes happens) in yesterday's incredibly high count. Haemoglobin continues to be stable. Today we had our first measurement of neutrophils. This is a particular type of white blood cell that specifically fights infection. Steven's count today was 1,900 (normal range 2,500-7,500). This is higher than it has been in two years. Suffice it to say that when Steven had pneumonia in May, his neutrophil count was 200. Once below the 500 mark, there is a massive risk of infection.
Matthew and I met with Dr. de Latour this evening. He insists that we shouldn't get too bogged down with all of these blood counts and numbers as they will fluctuate naturally from here on. He feels that what is important is a consistent upward trend, which is what we're seeing. He says that for a cord blood transplant, this has been a fantastic response.
There are still ongoing concerns. Steven's liver enzymes are now quite high. This is something they are never happy about. They are also increasingly apprehensive about the redness of his palms. Their main worry is that this might be the beginning of graft versus host disease, or perhaps another infection. Both of these are cases for high priority monitoring. De Latour is less concerned about the lung herpes, the central line infection and kidney situation, and feels these are well under control. He explained that their plan is also to greatly reduce the cyclosporine medication to eliminate the leg pain and discomfort, which was ongoing during the night and today.
Feargal has arrived this evening. Good!
Love as ever,
Evelyn, Matthew, Steven and Feargal
Blood counts remain good today. The white cells came in at 2,500. This is a decline, but they believe that there had been an error (it sometimes happens) in yesterday's incredibly high count. Haemoglobin continues to be stable. Today we had our first measurement of neutrophils. This is a particular type of white blood cell that specifically fights infection. Steven's count today was 1,900 (normal range 2,500-7,500). This is higher than it has been in two years. Suffice it to say that when Steven had pneumonia in May, his neutrophil count was 200. Once below the 500 mark, there is a massive risk of infection.
Matthew and I met with Dr. de Latour this evening. He insists that we shouldn't get too bogged down with all of these blood counts and numbers as they will fluctuate naturally from here on. He feels that what is important is a consistent upward trend, which is what we're seeing. He says that for a cord blood transplant, this has been a fantastic response.
There are still ongoing concerns. Steven's liver enzymes are now quite high. This is something they are never happy about. They are also increasingly apprehensive about the redness of his palms. Their main worry is that this might be the beginning of graft versus host disease, or perhaps another infection. Both of these are cases for high priority monitoring. De Latour is less concerned about the lung herpes, the central line infection and kidney situation, and feels these are well under control. He explained that their plan is also to greatly reduce the cyclosporine medication to eliminate the leg pain and discomfort, which was ongoing during the night and today.
Feargal has arrived this evening. Good!
Love as ever,
Evelyn, Matthew, Steven and Feargal
Sunday, 15 July 2007
DAY 18
White cells are now at 3,200 and haemoglobin hanging in there at 9.2!
A very, very hot, sleepy Sunday here in Paris. The temperature must have been above 30˚. This doesn't affect the interior of Trèfle 3 as it has a highly regulated air system, and so maintains a constant temperature of about 25˚. In fact, the ceiling all around the unit is quite low to house the highly specialised air conditioning system, which ensures the sterility of the air supply within each room. This gives a quite claustrophobic look particularly to the corridors: somebody of Feargal's height looks enormous in these surroundings. There is also always the incessant humming sound of the system. At its worst it feels like the place is vibrating – bit like being on a plane or a boat, I suppose.
Steven remains in very good form. However, he did develop pains in his legs overnight, particularly his knee joints, which didn't improve during the day. It is felt that perhaps his painkiller, acupan (which replaced the original high dosage of morphine), is not working so well as his system is now too accustomed to it. It was recommended that he increase his consumption of morphine to compensate. Not the best solution, I feel.
There is also now a minor difficulty with the efficiency of his kidneys. All scans and ultrasounds to date have shown that Steven's kidneys are disproportionate. As you may, or may not know, Steven's left kidney is much larger than the right and in fact does the work for both. This is a symptom of Fanconi anemia, but one which never caused any difficulty and of which, up until his diagnosis, we were unaware. He has been advised to drink lots of water and other liquids, which he is doing.
Both the leg and the kidney difficulty are felt to be side-effects of the cyclosporine (immunosuppressive) which is a very strong drug. They have now slightly lowered his intake of this medication. I am confident that both problems will be resolved soon. Eating continues apace – moussaka and dessert for lunch; roast chicken dinner, plus cheese and an orange for dinner. Steven's palms are now bright red and blotchy, which we will take as a very good sign of progressive engraftment.
We look forward to Feargal's return to Paris tomorrow evening. Matthew also returns to work (ie. teleworking) for half days from the apartment, as of tomorrow.
Love to all,
Evelyn, Matthew and Steven
A very, very hot, sleepy Sunday here in Paris. The temperature must have been above 30˚. This doesn't affect the interior of Trèfle 3 as it has a highly regulated air system, and so maintains a constant temperature of about 25˚. In fact, the ceiling all around the unit is quite low to house the highly specialised air conditioning system, which ensures the sterility of the air supply within each room. This gives a quite claustrophobic look particularly to the corridors: somebody of Feargal's height looks enormous in these surroundings. There is also always the incessant humming sound of the system. At its worst it feels like the place is vibrating – bit like being on a plane or a boat, I suppose.
Steven remains in very good form. However, he did develop pains in his legs overnight, particularly his knee joints, which didn't improve during the day. It is felt that perhaps his painkiller, acupan (which replaced the original high dosage of morphine), is not working so well as his system is now too accustomed to it. It was recommended that he increase his consumption of morphine to compensate. Not the best solution, I feel.
There is also now a minor difficulty with the efficiency of his kidneys. All scans and ultrasounds to date have shown that Steven's kidneys are disproportionate. As you may, or may not know, Steven's left kidney is much larger than the right and in fact does the work for both. This is a symptom of Fanconi anemia, but one which never caused any difficulty and of which, up until his diagnosis, we were unaware. He has been advised to drink lots of water and other liquids, which he is doing.
Both the leg and the kidney difficulty are felt to be side-effects of the cyclosporine (immunosuppressive) which is a very strong drug. They have now slightly lowered his intake of this medication. I am confident that both problems will be resolved soon. Eating continues apace – moussaka and dessert for lunch; roast chicken dinner, plus cheese and an orange for dinner. Steven's palms are now bright red and blotchy, which we will take as a very good sign of progressive engraftment.
We look forward to Feargal's return to Paris tomorrow evening. Matthew also returns to work (ie. teleworking) for half days from the apartment, as of tomorrow.
Love to all,
Evelyn, Matthew and Steven
Saturday, 14 July 2007
DAY 17
Steve's white blood cells have now risen to a staggering 2,100. This is higher than they were during many of the weeks before transplant. What's also interesting is that his haemoglobin is now hovering at around 9.0 (normal range 13.5-18.0); whereas, prior to transplant all the transfusions that were being poured into him on a regular basis just didn't seem to hold at all. It just all seems too good to be true: I'm afraid to dare to believe that this is actually working out so well. I can only attribute it to the surge of goodwill Steven has received from all quarters, with prayers being offered across all religious denominations; and of course Steven's own utter determination and cool, calm and collected nature.
This was a quiet Saturday in the hospital, as usual. Virginie was on duty again (very small, Indian, direct, forceful personality, no nonsense, with a raucous laugh.) Steven likes her a lot - as a nurse. She is most informative. They have now discovered from cultures taken on Thursday that Steven has an infection in his central line. This is the line protruding from his chest into which all of his medications, blood products etc. are transfused. Steven would not be aware of this as he has no symptoms to indicate a problem. This line is kept meticulously clean by the nurses and is completely changed once weekly. Everyone appears to be unconcerned about this infection as they feel they have identified it early and it is already under control.
Rachel Mulligan came to visit Steven this afternoon which was great as he got to see an old friend and also as it breaks up the monotony of the 'perpetual parent syndrome'. I don't believe Steven had seen Rachel since they were both in secondary school in Ixelles. She is working in marketing for the Four Seasons Hotel here in Paris. It was very nice of her to make the time to visit and also supply him with a bag load of DVDs into the bargain.
Today was very, very warm in Paris. It is also Bastille Day – lots of activity with fireworks and bangers being let off in the streets last night and tonight.
That's all the news for now.
Love,
Evelyn, Matthew and Steven
This was a quiet Saturday in the hospital, as usual. Virginie was on duty again (very small, Indian, direct, forceful personality, no nonsense, with a raucous laugh.) Steven likes her a lot - as a nurse. She is most informative. They have now discovered from cultures taken on Thursday that Steven has an infection in his central line. This is the line protruding from his chest into which all of his medications, blood products etc. are transfused. Steven would not be aware of this as he has no symptoms to indicate a problem. This line is kept meticulously clean by the nurses and is completely changed once weekly. Everyone appears to be unconcerned about this infection as they feel they have identified it early and it is already under control.
Rachel Mulligan came to visit Steven this afternoon which was great as he got to see an old friend and also as it breaks up the monotony of the 'perpetual parent syndrome'. I don't believe Steven had seen Rachel since they were both in secondary school in Ixelles. She is working in marketing for the Four Seasons Hotel here in Paris. It was very nice of her to make the time to visit and also supply him with a bag load of DVDs into the bargain.
Today was very, very warm in Paris. It is also Bastille Day – lots of activity with fireworks and bangers being let off in the streets last night and tonight.
That's all the news for now.
Love,
Evelyn, Matthew and Steven
Friday, 13 July 2007
DAY 16
Dear everyone,
The white cells are at a wonderful 1,500 and everybody is happy!
Steven was very bright and wide awake today. He is still spending the bulk of his time on the computer; the PS3 is also being used quite a lot; many DVDs have already been viewed and he is starting back into his reading again. Before he entered St. Louis he was enjoying reading "100 Years of Solitude" by Marques which takes a humorous look at insularity in the Colombian rainforest – ironic reading choice given the degree of isolation he's had to endure the past weeks. Now his reading interest has slumped to a book called "Merde Actually" – which may also be particularly apt, depending on how you look at things!
After my arrival today I immediately learned that yet another scan had been requested. It was quickly explained that this was just for monitoring purposes and not for any suspicious reason. They were fairly prompt in getting this underway this afternoon and the results were returned quickly. All the indications were good. The lung virus seems to have reduced very much and they concluded that the medication is working very well.
The entertainment value of eating 'quantities' of food at mealtimes now seems to have returned. Steven tried eating lunch without his morphine boost today but his throat was a quite sore afterwards. It looks like he will need to continue with the painkillers for a while longer.
Today, there were signs that boredom is beginning to seep into the situation – Steve was quite glad to get out of his room for a while, even if it was only for a scan. I take this as a sign that he is really on the mend. While I say this, I have to remind myself not to jump ahead and be overly optimistic about the recovery time needed. We can only take this one step at a time.
Have a good weekend one and all.
Evelyn, Matthew and Steven
The white cells are at a wonderful 1,500 and everybody is happy!
Steven was very bright and wide awake today. He is still spending the bulk of his time on the computer; the PS3 is also being used quite a lot; many DVDs have already been viewed and he is starting back into his reading again. Before he entered St. Louis he was enjoying reading "100 Years of Solitude" by Marques which takes a humorous look at insularity in the Colombian rainforest – ironic reading choice given the degree of isolation he's had to endure the past weeks. Now his reading interest has slumped to a book called "Merde Actually" – which may also be particularly apt, depending on how you look at things!
After my arrival today I immediately learned that yet another scan had been requested. It was quickly explained that this was just for monitoring purposes and not for any suspicious reason. They were fairly prompt in getting this underway this afternoon and the results were returned quickly. All the indications were good. The lung virus seems to have reduced very much and they concluded that the medication is working very well.
The entertainment value of eating 'quantities' of food at mealtimes now seems to have returned. Steven tried eating lunch without his morphine boost today but his throat was a quite sore afterwards. It looks like he will need to continue with the painkillers for a while longer.
Today, there were signs that boredom is beginning to seep into the situation – Steve was quite glad to get out of his room for a while, even if it was only for a scan. I take this as a sign that he is really on the mend. While I say this, I have to remind myself not to jump ahead and be overly optimistic about the recovery time needed. We can only take this one step at a time.
Have a good weekend one and all.
Evelyn, Matthew and Steven
Thursday, 12 July 2007
DAY 15
It's been rather quiet at home and on Trèfle today. Ellen departed for Bruxelles this afternoon. She will attend her dad's 50th birthday in Ireland next week (Happy birthday, Kevin!) and hopes to return to Paris for another visit in August.
Steven slept most of this afternoon, due to a very noisy Tréfle activity level last night – and possibly a bit of a hiatus effect following Ellen's departure. Otherwise he was in good form and eating very well.
The virus Steven has been harbouring has been identified. Apparently the polyps in the lung are indicative of herpes. Almost 90% of adults carry this herpes virus, it just never surfaces as a healthy immune system will usually keep it subdued. In compromised immune systems, like many other viruses and infections, it can just arise spontaneously. This is just one of the myriad potential complications of stem cell transplants. A blood test will be done tomorrow to check if this virus is also in his blood. If so, then his medication will again be changed to deal with this. Socié is adamnant that this is 'none of our concern' – I think he means this shouldn't concern us at all.
Steve's white cell count reached 1,100 today which seems truly magnificent. Socié called around this afternoon to bid us all a fond adieu before he leaves on vacation. He is off to Normandy for two weeks: last year he spent his summer hols in Killarney. He was a bit worried about the weather as it has been and still is rather cold and grim in Paris and Northern France ….. I digress! Anyway, he explained that tomorrow Steven will have a special peripheral blood test to assess the level of chimerism in his marrow. In simple terms, this means how much of Steven's blood cells are from the donor and how much are Steven's own. It is expected that the ratio at this point in time should be 80:20, respectively. It will take ten days to have the result of this test. Socié stated that he feels good engraftment is taking place and that things are going exceptionally well for Steven.
At this point they are also actively looking for any signs of graft versus host disease (GVHD). This occurs when the new donor stem cells begin to attack other cells in the body. Mostly, GVHD affects the skin, stomach and intestines, but in more serious cases the liver and other organs can also be impacted. While a certain amount of GVHD is considered good and necessary for proper engraftment, too much can lead to more serious complications. The good thing about cord blood transplants is that GVHD is usually less of a problem owing to the naïve nature of cord blood stem cells. At present Steven shows no signs of having this problem. The palms of his hands are a little red, but this is considered positively as they feel it is proof of active engraftment of the new stem cells. This will be carefully monitored over the coming weeks and months.
That's all the latest on the medical front. Let's hope more positive things lie ahead.
Love to all,
Evelyn, Matthew and Steven
Steven slept most of this afternoon, due to a very noisy Tréfle activity level last night – and possibly a bit of a hiatus effect following Ellen's departure. Otherwise he was in good form and eating very well.
The virus Steven has been harbouring has been identified. Apparently the polyps in the lung are indicative of herpes. Almost 90% of adults carry this herpes virus, it just never surfaces as a healthy immune system will usually keep it subdued. In compromised immune systems, like many other viruses and infections, it can just arise spontaneously. This is just one of the myriad potential complications of stem cell transplants. A blood test will be done tomorrow to check if this virus is also in his blood. If so, then his medication will again be changed to deal with this. Socié is adamnant that this is 'none of our concern' – I think he means this shouldn't concern us at all.
Steve's white cell count reached 1,100 today which seems truly magnificent. Socié called around this afternoon to bid us all a fond adieu before he leaves on vacation. He is off to Normandy for two weeks: last year he spent his summer hols in Killarney. He was a bit worried about the weather as it has been and still is rather cold and grim in Paris and Northern France ….. I digress! Anyway, he explained that tomorrow Steven will have a special peripheral blood test to assess the level of chimerism in his marrow. In simple terms, this means how much of Steven's blood cells are from the donor and how much are Steven's own. It is expected that the ratio at this point in time should be 80:20, respectively. It will take ten days to have the result of this test. Socié stated that he feels good engraftment is taking place and that things are going exceptionally well for Steven.
At this point they are also actively looking for any signs of graft versus host disease (GVHD). This occurs when the new donor stem cells begin to attack other cells in the body. Mostly, GVHD affects the skin, stomach and intestines, but in more serious cases the liver and other organs can also be impacted. While a certain amount of GVHD is considered good and necessary for proper engraftment, too much can lead to more serious complications. The good thing about cord blood transplants is that GVHD is usually less of a problem owing to the naïve nature of cord blood stem cells. At present Steven shows no signs of having this problem. The palms of his hands are a little red, but this is considered positively as they feel it is proof of active engraftment of the new stem cells. This will be carefully monitored over the coming weeks and months.
That's all the latest on the medical front. Let's hope more positive things lie ahead.
Love to all,
Evelyn, Matthew and Steven
Wednesday, 11 July 2007
DAY 14
Dear everyone,
Today, Matthew and I spent part of the morning and early afternoon with Steven. Ellen then took over for the remainder of the day. He is now very alert, not doing the same amount of 'napping' as previously, and eating habits have almost returned to normal. This gives the impression that he is not as vulnerable as he has appeared over the past two weeks, although, of course, this is not the case. Maximum precautions still need to be taken regarding his isolation and the sterility of his environment, food, contact, treatment etc.
Amazingly, his white cell count zoomed up to 800 white cells today. This means the number has doubled in the space of 24 hours. Still it is early days, and we are being urged to be cautious and not overly optimistic. His throat and swallowing difficulty has now really improved, thank goodness. He is still being treated aggressively for his lung virus. Blood sugar was up and down today, mostly in response to the different medications administered variously throughout the day.
As the days go by here, one is increasingly a little more aware of the patients in the surrounding rooms. The four short corridors of Trèfle are arranged in quadrangular fashion around a central island which houses some of the administration and doctors'/nurses' facilities. The nature of this unit means that patients and their visitors need to remain inside the rooms; however, occasionally, some of the patients are seen to emerge. Usually they are on their way to 'scan central' downstairs or sometimes the more advanced post-transplant patients are being allowed out for a while. The majority are very young. The patient to Steven's left is an 11 year old African French girl who is always surrounded by extended family of brothers and sisters – all gorgeous. The boy to his right is Algerian and 13 years old. His father is rather funny. He is thin as a whippet, and just as frisky, with a voice like Don Corleone. He is omnipresent during the day, mostly in the corridor and around nearly every corner (I think he exists in triplicate!). His exchange is typically "Ca va mieux? Ah c'est lent. C'est dur!" (Better today? It's slow, it's hard!) His son is very sick at the moment at one week post-transplant. It is so hard on young kids in this situation – I can't imagine how difficult it is for their families. Other patients I have encountered include two little girls of about seven, a young boy in his teens and a middle aged woman. I hope they all make a good recovery.
We are coming into the holiday season now, so many of the personnel are taking annual summer holidays. Prof. Socié will be gone for two weeks from Monday. This is a little concern – just as well we have great confidence in Dr. de Latour who is wholly competent and just has such a pleasant nature and disposition.
Let's hope tomorrow is another excellent day.
Evelyn, Matthew, Steven and Ellen
Today, Matthew and I spent part of the morning and early afternoon with Steven. Ellen then took over for the remainder of the day. He is now very alert, not doing the same amount of 'napping' as previously, and eating habits have almost returned to normal. This gives the impression that he is not as vulnerable as he has appeared over the past two weeks, although, of course, this is not the case. Maximum precautions still need to be taken regarding his isolation and the sterility of his environment, food, contact, treatment etc.
Amazingly, his white cell count zoomed up to 800 white cells today. This means the number has doubled in the space of 24 hours. Still it is early days, and we are being urged to be cautious and not overly optimistic. His throat and swallowing difficulty has now really improved, thank goodness. He is still being treated aggressively for his lung virus. Blood sugar was up and down today, mostly in response to the different medications administered variously throughout the day.
As the days go by here, one is increasingly a little more aware of the patients in the surrounding rooms. The four short corridors of Trèfle are arranged in quadrangular fashion around a central island which houses some of the administration and doctors'/nurses' facilities. The nature of this unit means that patients and their visitors need to remain inside the rooms; however, occasionally, some of the patients are seen to emerge. Usually they are on their way to 'scan central' downstairs or sometimes the more advanced post-transplant patients are being allowed out for a while. The majority are very young. The patient to Steven's left is an 11 year old African French girl who is always surrounded by extended family of brothers and sisters – all gorgeous. The boy to his right is Algerian and 13 years old. His father is rather funny. He is thin as a whippet, and just as frisky, with a voice like Don Corleone. He is omnipresent during the day, mostly in the corridor and around nearly every corner (I think he exists in triplicate!). His exchange is typically "Ca va mieux? Ah c'est lent. C'est dur!" (Better today? It's slow, it's hard!) His son is very sick at the moment at one week post-transplant. It is so hard on young kids in this situation – I can't imagine how difficult it is for their families. Other patients I have encountered include two little girls of about seven, a young boy in his teens and a middle aged woman. I hope they all make a good recovery.
We are coming into the holiday season now, so many of the personnel are taking annual summer holidays. Prof. Socié will be gone for two weeks from Monday. This is a little concern – just as well we have great confidence in Dr. de Latour who is wholly competent and just has such a pleasant nature and disposition.
Let's hope tomorrow is another excellent day.
Evelyn, Matthew, Steven and Ellen
Tuesday, 10 July 2007
DAY 13
Dear everyone,
All continues in a very positive light for Steven at St. Louis. Matthew and I spent the morning with him and he was in very good form indeed. The soreness in his throat and chest is improving daily and his appetite seems to be returning. He had soup, two slices of bread, yoghurt, pineapple compote and banana for lunch, and requested pasta bolognese for dinner. This is the first time he is eating such solids and in such volume since the day of the transplant. He has also been using the PS3 yesterday and today which also indicates a return to previous form.
The doctors have discovered from the cultures that he did indeed have a virus in his lungs. They have said that no concern is necessary as they have the matter in hand, with a further change in antibiotics, and treatment is well underway.
Ellen spent the entire afternoon and wouldn't be prised away when we returned at 6pm, armed with hot dinner, to check on things and say hi. They have been supplied with several DVDs to keep them amused this evening and seemed very content when we left.
I have saved the best news until last. Virginie, who was Steven's nurse today, arrived around lunchtime and said, "J'ai des resultats pour toi, Steven!" (I have some results for you Steven.) Apparently, STEVEN NOW HAS 400 WHITE BLOOD CELLS!!!! However, extreme excitement really needs to be tempered as we have been warned that, at the beginning, counts can rise only to plummet again. They will need to see a consistent upward trend over several blood counts before they are convinced. However, they do believe it is positive. To use Socié's words, "something is happening". Dr. de Latour is also pleased but stresses that they will continue to treat Steven as if he has zero white cells for the moment.
Thanks once again for all the wonderful support. We are glad to be able to share good tidings with you all.
Love,
Evelyn, Matthew, Steven and Ellen
All continues in a very positive light for Steven at St. Louis. Matthew and I spent the morning with him and he was in very good form indeed. The soreness in his throat and chest is improving daily and his appetite seems to be returning. He had soup, two slices of bread, yoghurt, pineapple compote and banana for lunch, and requested pasta bolognese for dinner. This is the first time he is eating such solids and in such volume since the day of the transplant. He has also been using the PS3 yesterday and today which also indicates a return to previous form.
The doctors have discovered from the cultures that he did indeed have a virus in his lungs. They have said that no concern is necessary as they have the matter in hand, with a further change in antibiotics, and treatment is well underway.
Ellen spent the entire afternoon and wouldn't be prised away when we returned at 6pm, armed with hot dinner, to check on things and say hi. They have been supplied with several DVDs to keep them amused this evening and seemed very content when we left.
I have saved the best news until last. Virginie, who was Steven's nurse today, arrived around lunchtime and said, "J'ai des resultats pour toi, Steven!" (I have some results for you Steven.) Apparently, STEVEN NOW HAS 400 WHITE BLOOD CELLS!!!! However, extreme excitement really needs to be tempered as we have been warned that, at the beginning, counts can rise only to plummet again. They will need to see a consistent upward trend over several blood counts before they are convinced. However, they do believe it is positive. To use Socié's words, "something is happening". Dr. de Latour is also pleased but stresses that they will continue to treat Steven as if he has zero white cells for the moment.
Thanks once again for all the wonderful support. We are glad to be able to share good tidings with you all.
Love,
Evelyn, Matthew, Steven and Ellen
Monday, 9 July 2007
DAY 12
Hello everyone again,
The post transplant days are now accumulating and hopefully we're getting nearer to seeing those stem cells appear. It's becoming more and more difficult to track time as there is a sameness about most of the days. Steven finds this particularly difficult and is usually unaware of what day we have.
This morning, I arrived as Steven was still sleeping. This was a continuation of his night-time sleep. It's hard to sleep solidly on Trèfle during the night as all of the patients need to be regularly checked and have their medications continuously administered which results in constant activity and interruptions, with monitors constantly bleeping for attention throughout the night. It's not surprising that so much daytime sleep needs to replace what was missed nocturnally.
Steven, once awake was in very good form. The throat and oesophagus soreness still persists but is slowly improving. De Latour came in to state that at present they have no worries about the lungs: everything from the cultures appears normal so they are convinced that the temperature problem was wholly transplant related. This being said, they still went on to take another chest x ray. I'm beginning to dread these, but am glad that they are being thorough and pro-active. Later in the day, the interne caught Matthew in the hall to say how well she felt Steven was looking today (and this is the new 'hairless' Steve!).
Ellen arrived sometime after six. It was so good to see a familiar face from Brussels and I know her presence will impact Steven really positively. Having donned all the sterile gear, including bonnet she commented, "I see there was no point in doing the hair then!" – the bonnets are not the most flattering accessory.
So, all is good this evening. Steven still looks very cute, as anticipated, but more importantly he's feeling good. Fantastic!
Love to all,
Evelyn, Matthew, Steven and Ellen
The post transplant days are now accumulating and hopefully we're getting nearer to seeing those stem cells appear. It's becoming more and more difficult to track time as there is a sameness about most of the days. Steven finds this particularly difficult and is usually unaware of what day we have.
This morning, I arrived as Steven was still sleeping. This was a continuation of his night-time sleep. It's hard to sleep solidly on Trèfle during the night as all of the patients need to be regularly checked and have their medications continuously administered which results in constant activity and interruptions, with monitors constantly bleeping for attention throughout the night. It's not surprising that so much daytime sleep needs to replace what was missed nocturnally.
Steven, once awake was in very good form. The throat and oesophagus soreness still persists but is slowly improving. De Latour came in to state that at present they have no worries about the lungs: everything from the cultures appears normal so they are convinced that the temperature problem was wholly transplant related. This being said, they still went on to take another chest x ray. I'm beginning to dread these, but am glad that they are being thorough and pro-active. Later in the day, the interne caught Matthew in the hall to say how well she felt Steven was looking today (and this is the new 'hairless' Steve!).
Ellen arrived sometime after six. It was so good to see a familiar face from Brussels and I know her presence will impact Steven really positively. Having donned all the sterile gear, including bonnet she commented, "I see there was no point in doing the hair then!" – the bonnets are not the most flattering accessory.
So, all is good this evening. Steven still looks very cute, as anticipated, but more importantly he's feeling good. Fantastic!
Love to all,
Evelyn, Matthew, Steven and Ellen
Sunday, 8 July 2007
DAY 11
Steven has been looking at me for the past week, all the while tugging the hair on his head, saying, "I thought this was all meant to fall out?" "Don’t tempt fate" and "Never look a gift horse in the mouth" have been my usual responses. Well, today it is happening: the hair is literally wiping away off his face and head. Steven had grown a beard in hospital as he felt there was no point in shaving if it was all going to disappear anyway. Ellen had already done a nice job of buzz-cutting his hair in the middle of June, and it really suited him; so, I think he will still look cute with no hair. (That may be a mother's rose tinted spectacles gaining the upper hand in the judgement stakes!) Privately, I think he finds the prospect of being clean shaven as 'cool' enough, more of a fashion statement type of thing. Tonight he is going to finish the job off properly and completely shave his head and chin. I'll be interested to see how he looks tomorrow.
Sunday is usually very quiet here, but today we had Wimbledon! Steven and I watched it together and really enjoyed it. I was so glad my favourite, Federer, won. Steven didn't really have a favourite but just enjoys good sport when he sees it. I don't know what we're going to watch next week, now that it's over. We may have to turn to DVDs.
Today was a really good day for Steven. He had a long nap early afternoon and seemed very refreshed after it and in very good form. He has mastered the morphine dosage so that it helps him eat but doesn't affect him too negatively otherwise. He had soup and yoghurt at lunch; and tagliatelle with smoked salmon, followed by yet another yoghurt and ice cream this evening. That's not doing too badly, I feel. At the moment, he cannot tolerate anything that's acidic and finds dairy based produce much easier to consume than other foods. His intravenous feed is still up and they added a bag of separate vitamins nutrients yesterday. He's certainly getting everything he needs diet-wise. Temperature and oxygen levels also remained within normal parameters today.
That's about it for the moment.
Love to all,
Evelyn, Matthew and Steven
Sunday is usually very quiet here, but today we had Wimbledon! Steven and I watched it together and really enjoyed it. I was so glad my favourite, Federer, won. Steven didn't really have a favourite but just enjoys good sport when he sees it. I don't know what we're going to watch next week, now that it's over. We may have to turn to DVDs.
Today was a really good day for Steven. He had a long nap early afternoon and seemed very refreshed after it and in very good form. He has mastered the morphine dosage so that it helps him eat but doesn't affect him too negatively otherwise. He had soup and yoghurt at lunch; and tagliatelle with smoked salmon, followed by yet another yoghurt and ice cream this evening. That's not doing too badly, I feel. At the moment, he cannot tolerate anything that's acidic and finds dairy based produce much easier to consume than other foods. His intravenous feed is still up and they added a bag of separate vitamins nutrients yesterday. He's certainly getting everything he needs diet-wise. Temperature and oxygen levels also remained within normal parameters today.
That's about it for the moment.
Love to all,
Evelyn, Matthew and Steven
Saturday, 7 July 2007
DAY 10
A quiet, uneventful, time in the hospital today, thank goodness - no complaints about that.
Steven was again looking good and alert. He was taken off the oxygen this morning, which he was mightily relieved about as he hates having that plastic nose piece stuck up his nostrils. His blood oxygen is just about holding its own at the moment and his temperature remains normal. However, he continues to have great difficulty with sore throat and oesophagus which makes eating and swallowing a real trial. This seems to have worsened since yesterday. In order to ease this situation they have put back up the morphine pump, but only as a booster for when the pain is really bad, and for just before meal times to enable him to eat more comfortably. Steven is very reluctant to use the morphine as he doesn't want to return to needing oxygen, but the morphine apparently is the best drug for this problem and has been specially adapted for this purpose. Naturally, Steven finds this 'lesser of two evils' situation very irritating. The result is he is trying to hold off on the morphine as much as he can, but then has to suffer the resulting discomfort. Understandably, his mood today was one of growing frustration.
At the moment, the bright spot on the horizon is Ellen's arrival on Monday evening. I think this will improve Steven's present disposition enormously, and Matthew and I are also looking forward to Ellen's good company during next week.
For any of you who might be just a little curious, trèfle is the French word for clover. (All the different wards and sections in St. Louis are named after various plants and flowers.) A lot of the logos for Trèfle 3 depict a four leafed clover (for good luck I guess) but more often than not the symbol just looks like a bit of shamrock. It lends a nice 'homey' touch!
Evelyn, Matthew and Steven
Steven was again looking good and alert. He was taken off the oxygen this morning, which he was mightily relieved about as he hates having that plastic nose piece stuck up his nostrils. His blood oxygen is just about holding its own at the moment and his temperature remains normal. However, he continues to have great difficulty with sore throat and oesophagus which makes eating and swallowing a real trial. This seems to have worsened since yesterday. In order to ease this situation they have put back up the morphine pump, but only as a booster for when the pain is really bad, and for just before meal times to enable him to eat more comfortably. Steven is very reluctant to use the morphine as he doesn't want to return to needing oxygen, but the morphine apparently is the best drug for this problem and has been specially adapted for this purpose. Naturally, Steven finds this 'lesser of two evils' situation very irritating. The result is he is trying to hold off on the morphine as much as he can, but then has to suffer the resulting discomfort. Understandably, his mood today was one of growing frustration.
At the moment, the bright spot on the horizon is Ellen's arrival on Monday evening. I think this will improve Steven's present disposition enormously, and Matthew and I are also looking forward to Ellen's good company during next week.
For any of you who might be just a little curious, trèfle is the French word for clover. (All the different wards and sections in St. Louis are named after various plants and flowers.) A lot of the logos for Trèfle 3 depict a four leafed clover (for good luck I guess) but more often than not the symbol just looks like a bit of shamrock. It lends a nice 'homey' touch!
Evelyn, Matthew and Steven
Friday, 6 July 2007
DAY 9
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
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
Thursday, 5 July 2007
DAY 8
It's been another eventful but long day of waiting here on Trèfle 3.
To begin with, Dr. de Latour was concerned this morning that Steven had had to be placed on oxygen. With his temperature still sky high, thoughts quickly turned again towards the lung situation. An x ray was felt to be necessary and yet again they were not happy with what they 'thought' they could see. Socié appeared at this point and said they felt there had been a technical glitch with the x ray technology, therefore another x ray was essential.
By the time I arrived, just before 12 noon (with Steven's hot lunch in tow), there was talk of fluid on the lung. Another x ray done and examined, de Latour said it was definitely not fluid but that there was now a spot on his left lung that needed further investigation. (This is not the same lung where he had the pneumonia, by the way.) Another scan was deemed to be order of the day. More waiting, waiting, waiting ……
Feargal sat with Steven all afternoon. Steven was taken off morphine as his body was not handling it very well and it was felt it was having too much of a negative impact upon his oxygen levels. A different painkiller substituted, a paracetamol shot was given when Steve's temperature rose again to around 40˚. He still remains on oxygen.
Matthew and I arrived early evening, as Steven was reaching exhaustion point. Eventually at about 7:50 we were called in by de Latour. He explained that, following the scan, he would have a discussion with the pneumologist and, based upon the results, they would decide whether a fibre-oscopy is needed to further investigate this potential lesion. This involves sending a tiny camera through the nose and into the lung to have a look around. Steven had this done before during his pneumonia bout and found it most unpleasant. Due to Steven's present condition, this would now need to be done under anaesthetic and in intensive care in case there is a problem. This apparently involves an entire morning (8 – 3:00) in intensive care.
It's now 9:00pm and Steven is back in his room, post-scan, and the whole re-sterilisation process with the iodine wash starts over again. We will only know the scan results tomorrow morning.
So, the swings and roundabouts continue. Looking at Steven now, it's hard to accept the paradox of this situation – that he needs to be made so ill in order to be made better. Let's hope tomorrow is a better day, with better news.
Evelyn, Matthew, Steven and Feargal
To begin with, Dr. de Latour was concerned this morning that Steven had had to be placed on oxygen. With his temperature still sky high, thoughts quickly turned again towards the lung situation. An x ray was felt to be necessary and yet again they were not happy with what they 'thought' they could see. Socié appeared at this point and said they felt there had been a technical glitch with the x ray technology, therefore another x ray was essential.
By the time I arrived, just before 12 noon (with Steven's hot lunch in tow), there was talk of fluid on the lung. Another x ray done and examined, de Latour said it was definitely not fluid but that there was now a spot on his left lung that needed further investigation. (This is not the same lung where he had the pneumonia, by the way.) Another scan was deemed to be order of the day. More waiting, waiting, waiting ……
Feargal sat with Steven all afternoon. Steven was taken off morphine as his body was not handling it very well and it was felt it was having too much of a negative impact upon his oxygen levels. A different painkiller substituted, a paracetamol shot was given when Steve's temperature rose again to around 40˚. He still remains on oxygen.
Matthew and I arrived early evening, as Steven was reaching exhaustion point. Eventually at about 7:50 we were called in by de Latour. He explained that, following the scan, he would have a discussion with the pneumologist and, based upon the results, they would decide whether a fibre-oscopy is needed to further investigate this potential lesion. This involves sending a tiny camera through the nose and into the lung to have a look around. Steven had this done before during his pneumonia bout and found it most unpleasant. Due to Steven's present condition, this would now need to be done under anaesthetic and in intensive care in case there is a problem. This apparently involves an entire morning (8 – 3:00) in intensive care.
It's now 9:00pm and Steven is back in his room, post-scan, and the whole re-sterilisation process with the iodine wash starts over again. We will only know the scan results tomorrow morning.
So, the swings and roundabouts continue. Looking at Steven now, it's hard to accept the paradox of this situation – that he needs to be made so ill in order to be made better. Let's hope tomorrow is a better day, with better news.
Evelyn, Matthew, Steven and Feargal
Wednesday, 4 July 2007
DAY 7
Hello everyone,
It's been yet another long day at St. Louis, so we are fairly exhausted. Feargal has just arrived up from Brussels, so I will keep this very short this evening.
When I arrived at the hospital this morning, Steven was sleeping – nothing unusual about that at the moment. He then woke up just as the nurse arrived. His mucousitis had really worsened overnight to the extent that he could not drink water, only take small sips. He said that the pain in his mouth and throat was really bad: a massive mouth ulcer had also appeared. To enable him to cope with all of this a morphine pump has now been added into the mix. This has the effect of decreasing the discomfort but it also makes the patient even more sleepy and a bit groggy. Anyway, Steven has been asleep most of the day. He did have soup at lunch and this evening, along with several yoghurts and bananas.
The combination of high temperature and morphine has made the oxygen levels in his blood drop, so this evening he has been put on oxygen.
Otherwise, Steven was in really good form (may be some morphine effect there) in between nap times, discussing the news, Wimbledon and so on. As I left he was on the computer and about to have a wash.
Evelyn, Matthew, Steven and Feargal
It's been yet another long day at St. Louis, so we are fairly exhausted. Feargal has just arrived up from Brussels, so I will keep this very short this evening.
When I arrived at the hospital this morning, Steven was sleeping – nothing unusual about that at the moment. He then woke up just as the nurse arrived. His mucousitis had really worsened overnight to the extent that he could not drink water, only take small sips. He said that the pain in his mouth and throat was really bad: a massive mouth ulcer had also appeared. To enable him to cope with all of this a morphine pump has now been added into the mix. This has the effect of decreasing the discomfort but it also makes the patient even more sleepy and a bit groggy. Anyway, Steven has been asleep most of the day. He did have soup at lunch and this evening, along with several yoghurts and bananas.
The combination of high temperature and morphine has made the oxygen levels in his blood drop, so this evening he has been put on oxygen.
Otherwise, Steven was in really good form (may be some morphine effect there) in between nap times, discussing the news, Wimbledon and so on. As I left he was on the computer and about to have a wash.
Evelyn, Matthew, Steven and Feargal
Tuesday, 3 July 2007
DAY 6
Hello everyone,
Imagine our relief when we heard that the lung scan showed no sign of pneumonia. Alleluia! Steven had eventually been wheeled out of his 'bubble' at elevenish this morning, smothered in sterile gowns, mask, booties etc. While they had him out of the room, they decided to do a scan of his sinuses for good measure, in an effort to rule out any problem there. Back in his room, he had to wash himself from head to toe in iodine and have his central line completely cleaned and re-bandaged. Needless to say, he was exhausted after all of this and spent the remainder of the afternoon asleep.
Many doctors came and went today. Socié arrived at about 2:00 to declare that he was happy with the scan result and feels re-assured that the high temperature (still hovering above 38˚) is Steven's body's response to all of the highly toxic drugs that have been administered. The interne, Annalise (young, Italian, lovely, highly chatty) dropped in late afternoon. She reiterated to me (while Steven snoring heavily) everything about the scan findings and added that all the cultures they have done so far have been negative
Steven's condition today has been okay. His mouth is sorer than yesterday and he is having difficulty swallowing with his sore throat. He is now also on a painkiller for his stomach cramps. Despite all of this, he still managed to eat some minestrone soup and banana for lunch and half a lasagne followed by chocolate mousse (his choice) this evening. Miraculously it all stayed down!
It's been a long day.
Evelyn, Matthew and Steven
Imagine our relief when we heard that the lung scan showed no sign of pneumonia. Alleluia! Steven had eventually been wheeled out of his 'bubble' at elevenish this morning, smothered in sterile gowns, mask, booties etc. While they had him out of the room, they decided to do a scan of his sinuses for good measure, in an effort to rule out any problem there. Back in his room, he had to wash himself from head to toe in iodine and have his central line completely cleaned and re-bandaged. Needless to say, he was exhausted after all of this and spent the remainder of the afternoon asleep.
Many doctors came and went today. Socié arrived at about 2:00 to declare that he was happy with the scan result and feels re-assured that the high temperature (still hovering above 38˚) is Steven's body's response to all of the highly toxic drugs that have been administered. The interne, Annalise (young, Italian, lovely, highly chatty) dropped in late afternoon. She reiterated to me (while Steven snoring heavily) everything about the scan findings and added that all the cultures they have done so far have been negative
Steven's condition today has been okay. His mouth is sorer than yesterday and he is having difficulty swallowing with his sore throat. He is now also on a painkiller for his stomach cramps. Despite all of this, he still managed to eat some minestrone soup and banana for lunch and half a lasagne followed by chocolate mousse (his choice) this evening. Miraculously it all stayed down!
It's been a long day.
Evelyn, Matthew and Steven
Monday, 2 July 2007
DAY 5
Well, the temperature is still high today and the hunt for the possible source continues unabated. Socié checked in on Steven early this morning. This was quickly followed by Dr. de Latour and an x ray of his chest and lungs was quickly organised. The radiographer felt that there was something showing on one of his lungs, so yet another scan has been requested. (Steven has been scanned so often now, and from so many angles, it must be a record!) Up until I left a few minutes ago, this scan had not yet materialised, but from experience I know this often doesn't happen until very late - past 11pm sometimes.
Matthew and I had an appointment with Dr. de Latour this evening at six just to get an update of how he sees things progressing. He is just WONDERFUL! He feels that things are okay primarily because they view Steven as being healthy going into transplant, and the fact that he remains alert and moving well, with markers such as blood pressure etc. all under control. He had some concern about the lungs but feels that if an infection does resurrect itself, then they have caught it in plenty of time and have the antibiotics to deal with it.
Steven is still feeling discomfort in his stomach, and now his throat. It's not an intolerable thing, just very bothersome to have it nearly all the time. Lunch didn't stay down for very long today, so I think there needs to be a serious re-think of what he is eating and how often. Not sure his stomach can cope with a large, sudden intake of food, and his appetite is certainly not up to it either. In response to this, a large bag of intravenous nutrition has been added to his regime to provide all the sustenance needed. He is still encouraged to eat whatever he can, whenever he can, and he did fine eating some of his evening meal.
Mood-wise, Steven is a little grumpy (highly understandable) but very determined (great!).
We should have scan results by tomorrow. Hopefully, all will be well.
Love as ever,
Evelyn, Matthew and Steven
Matthew and I had an appointment with Dr. de Latour this evening at six just to get an update of how he sees things progressing. He is just WONDERFUL! He feels that things are okay primarily because they view Steven as being healthy going into transplant, and the fact that he remains alert and moving well, with markers such as blood pressure etc. all under control. He had some concern about the lungs but feels that if an infection does resurrect itself, then they have caught it in plenty of time and have the antibiotics to deal with it.
Steven is still feeling discomfort in his stomach, and now his throat. It's not an intolerable thing, just very bothersome to have it nearly all the time. Lunch didn't stay down for very long today, so I think there needs to be a serious re-think of what he is eating and how often. Not sure his stomach can cope with a large, sudden intake of food, and his appetite is certainly not up to it either. In response to this, a large bag of intravenous nutrition has been added to his regime to provide all the sustenance needed. He is still encouraged to eat whatever he can, whenever he can, and he did fine eating some of his evening meal.
Mood-wise, Steven is a little grumpy (highly understandable) but very determined (great!).
We should have scan results by tomorrow. Hopefully, all will be well.
Love as ever,
Evelyn, Matthew and Steven
Sunday, 1 July 2007
DAY 4
Dear all,
Today, Steven has continued to be alert and moving well, with naps in between. He returned to using his PS3, which was the first time since last Thursday – and also spent time on the computer which is pretty much a mainstay. He has a webcam on the computer which has been great as it means he can see certain people while he is chatting with them.
His temperature remains high (nearly 40˚ at times), as a result of which he did have a shivering episode with heart palpitations this afternoon. Thankfully, that was very shortlived and didn't recur. Naturally, they are monitoring closely and feel confident they will have this under control by tomorrow.
Steven's appetite hasn't been the same since Thursday's transplant and this evening he felt rather ill having eaten his dinner. Normally, at this point post transplant the long term effects of the chemotherapy begin to take their toll. Chemotherapy destroys all kinds of cells, particularly those that are most susceptible – specifically those that line inside the mouth, the oesophagus and throughout the gastro-intestinal tract. The outcome of this is a very sore mouth and an inability to keep food in the stomach for very long. Not all patients get this, but the vast majority do, to varying degrees. This is, most likely, the start of this difficult phase for Steven as he has already developed a small mouth ulcer. This inflammation, or mucousitis as it is called, normally does not really heal until the white blood cells are created and begin their repair job. Roll on those white cells!
Prof. Socié saw Steven this morning and told him he was not at all worried about him and felt things are going well. Steve will see Dr. de Latour tomorrow morning.
That's about it for today's summary.
Evelyn, Matthew and Steven
Today, Steven has continued to be alert and moving well, with naps in between. He returned to using his PS3, which was the first time since last Thursday – and also spent time on the computer which is pretty much a mainstay. He has a webcam on the computer which has been great as it means he can see certain people while he is chatting with them.
His temperature remains high (nearly 40˚ at times), as a result of which he did have a shivering episode with heart palpitations this afternoon. Thankfully, that was very shortlived and didn't recur. Naturally, they are monitoring closely and feel confident they will have this under control by tomorrow.
Steven's appetite hasn't been the same since Thursday's transplant and this evening he felt rather ill having eaten his dinner. Normally, at this point post transplant the long term effects of the chemotherapy begin to take their toll. Chemotherapy destroys all kinds of cells, particularly those that are most susceptible – specifically those that line inside the mouth, the oesophagus and throughout the gastro-intestinal tract. The outcome of this is a very sore mouth and an inability to keep food in the stomach for very long. Not all patients get this, but the vast majority do, to varying degrees. This is, most likely, the start of this difficult phase for Steven as he has already developed a small mouth ulcer. This inflammation, or mucousitis as it is called, normally does not really heal until the white blood cells are created and begin their repair job. Roll on those white cells!
Prof. Socié saw Steven this morning and told him he was not at all worried about him and felt things are going well. Steve will see Dr. de Latour tomorrow morning.
That's about it for today's summary.
Evelyn, Matthew and Steven
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