Dear everyone,
We didn’t arrive at the dreaded Urgences until about midday, mostly as a result of Steven’s delaying tactics. I honestly can’t blame him as who wants to rush into an experience already known to be unpleasant and which will undoubtedly involve extensive waiting despite the critical nature of the temperature. We soon discovered upon arrival that it was a very, very busy morning, with wall to wall bodies everywhere. The receptionist hadn’t a clue who Steven was and suggested we wait in the ‘choc a bloc’ waiting room. Needless to say, that was never going to happen! Eventually, after some discussion, we were assigned to a gurney in an alcove off the main corridor. Matthew then dispatched himself to the haematology clinic to say we had finally arrived and to find out what the plan would be.
In the meantime, Steven had been taken in for a preliminary check up. Very shortly afterwards, Dr. Robin arrived, quickly followed by Dr. de Latour. She explained that they might be able to offer a bed in Trèfle 3, providing they could safely turf out an existing patient. She felt this was likely but it would take until the evening. Finally, by about 7pm, Steven eventually made it into Trèfle. It was a long wait but hopefully worth it.
It’s a little strange to be back in the transplant unit again. It’s a return to being masked, gowned, bonneted and booteed as one cannot even enter this section without all the protective gear. There is such a different atmosphere here to the rest of the hospital. Everyone goes out of their way to be extra, extra nice and helpful. Steven feels he is in very familiar and safe hands.
At the moment, Steven is looking and feeling fine. The temperature seems to have disappeared for the time being and this continues to flummox everyone. They can hear nothing unusual in his lungs, but will do another scan this evening or tomorrow anyway. Mouth swabs and blood have been taken to be analysed and cultured in the lab. Dr. de Latour has said it might be a virus, or several viruses. Broad spectrum antibiotics are being administered just to be safe and they are actively readjusting and rethinking all of his medications. Socié arrived this afternoon to say they would like to understand the source of the problem – again he mentioned a virus. He thinks that Steven should be in hospital for only a few days. They are all thinking that he may have just caught the cold Matthew and I had. The lab results should be able to confirm the presence of a virus by this evening or tomorrow. We’ll see.
Blood wise, Steven needed two transfusions last night of platelets and haemoglobin. His white cells have rebounded yet again towards the 6,000 mark. He really needs to get beyond these low lying infections resulting in low grade fevers to allow his marrow to get more actively involved in creating a healthy blood supply. Onwards and upwards!
That’s about it for today from the Steven chronicles.
Love to all,
Evelyn, Matthew and Steven
Tuesday, 30 October 2007
Monday, 29 October 2007
DAY 124
Dear all,
We are just about to leave for Urgences. This morning Steven awoke with a temperature of 40.1. The HAD nurses have just left and we have already spoken with haematology in St. Louis. Our thinking is that Steven has picked up our cold as he is coughing and has congestion in his nose. He will almost certainly be retained in the hospital and is not at all happy - very reluctant to leave the apartment, I would say.
The worst scenario facing us today will be 'no bed' and an overnight stay in Urgences.
Wish us luck!!
Love to all,
Evelyn, Matthew and Steven
We are just about to leave for Urgences. This morning Steven awoke with a temperature of 40.1. The HAD nurses have just left and we have already spoken with haematology in St. Louis. Our thinking is that Steven has picked up our cold as he is coughing and has congestion in his nose. He will almost certainly be retained in the hospital and is not at all happy - very reluctant to leave the apartment, I would say.
The worst scenario facing us today will be 'no bed' and an overnight stay in Urgences.
Wish us luck!!
Love to all,
Evelyn, Matthew and Steven
Sunday, 28 October 2007
DAY 123
Dear all,
The temperature struggle continues. Upon waking this morning, Steven's temp was 38.3˚. By lunchtime, it was down to 37.7, then 37.5, but unfortunately this evening it has resurged to 38˚. Although both nurses today have been concerned, we have not rushed off to hospital. Dr. Robin had already advised us that unless Steven's temperature rose above 38.5, we could safely stay at home. She made this decision in light of their past struggles witnessing the feverish rises and falls and their inability to find a reasonable cause for these. They will be reluctant to admit him for further observation unless they have some other more specific symptoms to investigate. We have been warned to be vigilant for any new developments in this respect, but so far, there is nothing outside of the fever.
The added complication is that Matthew and I have contracted slight colds which started off with a sore throat. Neither of us ever get colds or flu - we might get a few mild symptoms which never amount to anything major. Under normal circumstances we wouldn't bother about a few sneezes, but with Steven's ultra low immunity, this has become a real worry. All the doctors and nurses know that we have colds and confirmed that all we can do is wear masks and keep our hands very sterile, which is exactly what we've been doing. It is possible, I suppose, that Steven might be beginning a cold, although he has no symptoms.
Tomorrow morning the HAD nurse will do a blood draw for lab analysis as it is expected that Steven will need platelets either tomorrow or Tuesday. In that event, he will have to attend the hôpital de jour for a few hours. So, by tomorrow we will probably have had some dialogue with haematology and they can confirm how to proceed. Hopefully we do not end up back in hospital! Hopefully the temp will remain below 38.5 for tonight at least!
On a different note, we have successfully moved into our new apartment. We were really only unpacked and properly organised by this evening as it took three car runs yesterday to get everything moved from the 16th to the 10th arrondissement. At this point, a large part of our luggage is medical equipment and boxes upon boxes of drugs, as you can imagine. Although less elegant, it's good to be back in this area which feels more like home turf. The fact that the hospital is so near and accessible is also soothing.
That about covers it for this weekend.
Love to all,
Evelyn, Matthew and Steven
The temperature struggle continues. Upon waking this morning, Steven's temp was 38.3˚. By lunchtime, it was down to 37.7, then 37.5, but unfortunately this evening it has resurged to 38˚. Although both nurses today have been concerned, we have not rushed off to hospital. Dr. Robin had already advised us that unless Steven's temperature rose above 38.5, we could safely stay at home. She made this decision in light of their past struggles witnessing the feverish rises and falls and their inability to find a reasonable cause for these. They will be reluctant to admit him for further observation unless they have some other more specific symptoms to investigate. We have been warned to be vigilant for any new developments in this respect, but so far, there is nothing outside of the fever.
The added complication is that Matthew and I have contracted slight colds which started off with a sore throat. Neither of us ever get colds or flu - we might get a few mild symptoms which never amount to anything major. Under normal circumstances we wouldn't bother about a few sneezes, but with Steven's ultra low immunity, this has become a real worry. All the doctors and nurses know that we have colds and confirmed that all we can do is wear masks and keep our hands very sterile, which is exactly what we've been doing. It is possible, I suppose, that Steven might be beginning a cold, although he has no symptoms.
Tomorrow morning the HAD nurse will do a blood draw for lab analysis as it is expected that Steven will need platelets either tomorrow or Tuesday. In that event, he will have to attend the hôpital de jour for a few hours. So, by tomorrow we will probably have had some dialogue with haematology and they can confirm how to proceed. Hopefully we do not end up back in hospital! Hopefully the temp will remain below 38.5 for tonight at least!
On a different note, we have successfully moved into our new apartment. We were really only unpacked and properly organised by this evening as it took three car runs yesterday to get everything moved from the 16th to the 10th arrondissement. At this point, a large part of our luggage is medical equipment and boxes upon boxes of drugs, as you can imagine. Although less elegant, it's good to be back in this area which feels more like home turf. The fact that the hospital is so near and accessible is also soothing.
That about covers it for this weekend.
Love to all,
Evelyn, Matthew and Steven
Friday, 26 October 2007
DAY 121
Dear everyone,
It's been a while, I know, but there have been no real developments to report since Steven's return home. There have also been difficulties with accessing the blog site which kept crashing every time I tried to do a posting. The problem is now solved - something to do with spy ware apparently, although this was not entirely obvious at the outset. Anyway, here's the update.
The HAD have continued with their twice daily visits. On Monday, Steven had to go back to St. Louis for a platelet transfusion as he still requires these approximately twice weekly. Tuesday saw yet another lung scan which involved a trip across town to another medical facility outside of the hospital. They were quick and efficient, so no complaints. During the week, he has been out and about doing some short walks and spending some quality time on the exercise bike. The low grade fevers have also remained a feature. On Wednesday, Steven's temperature peaked at 38˚, while yesterday it hovered around 37.7˚. This morning he again awoke to 38˚. The pattern seems to be – a morning high, followed by slow descent during the day – I'm not sure that this is of any significance in itself.
Yesterday, we had our weekly rendezvous at the hôpital de jour. They did some pretty extensive blood tests which normally form part of the 100 day check up. A main focus of these tests is to ascertain how his new immune system is developing – 'not too well', they suspect, as there have been so many problems with post-transplant infection. There is a plan to follow up with some further tests next week to provide an update and a benchmark as to how things are progressing at this point in time. Steven received another platelet transfusion yesterday and his haemoglobin level continues to drop relentlessly. His white count was also down dramatically. While it is important not to focus too intently on this 'number game', the reality is that Steven's new marrow really needs to start producing across all varieties of blood cell and in greater numbers. A real sign of progress would be transfusion independence which still seems to elude him.
During clinic, Dr. Nguyen visited to say she had looked at the lung scan and found that things had improved with the mysterious lesions – so, no bronchoscopy. Steven was mightily relieved! She wished Steven well and hoped never to see him again in pneumology! We really hope so too!
The day clinic was a little disappointing this week as Julien seemed to have been abandoned there to run everything single handedly. Julien is an interne who has a habit of looking baffled and nervous in equal measure. He compensates by being a real sweetheart and is ever so helpful. (I'm sure he'll make a great haematologist one day: he just needs experience.) We arrived at clinic at 9:30 and weren't released until 5:30 – this was the longest and dreariest it's ever been and with the least feedback.
Matthew and I also went to view an apartment yesterday. It is two bedroomed, quite spacious, overlooks the Canal St. Martin, and most importantly it is literally around the corner from the hospital – less than five minutes walk. It really has everything we need, so we decided to take it and will move in there tomorrow afternoon. Our lease on this particular rental will run until December 21st. We are wishing to be homeward bound at least by the Christmas period as it is highly unlikely that a return to Brussels will be possible before then.
That's about all revelation-wise for the moment. We are wishing that Steven remains fever and bacteria free and that his marrow will just leap into action any day now - we know that you are all wishing the same.
Love to all,
Evelyn, Matthew and Steven
It's been a while, I know, but there have been no real developments to report since Steven's return home. There have also been difficulties with accessing the blog site which kept crashing every time I tried to do a posting. The problem is now solved - something to do with spy ware apparently, although this was not entirely obvious at the outset. Anyway, here's the update.
The HAD have continued with their twice daily visits. On Monday, Steven had to go back to St. Louis for a platelet transfusion as he still requires these approximately twice weekly. Tuesday saw yet another lung scan which involved a trip across town to another medical facility outside of the hospital. They were quick and efficient, so no complaints. During the week, he has been out and about doing some short walks and spending some quality time on the exercise bike. The low grade fevers have also remained a feature. On Wednesday, Steven's temperature peaked at 38˚, while yesterday it hovered around 37.7˚. This morning he again awoke to 38˚. The pattern seems to be – a morning high, followed by slow descent during the day – I'm not sure that this is of any significance in itself.
Yesterday, we had our weekly rendezvous at the hôpital de jour. They did some pretty extensive blood tests which normally form part of the 100 day check up. A main focus of these tests is to ascertain how his new immune system is developing – 'not too well', they suspect, as there have been so many problems with post-transplant infection. There is a plan to follow up with some further tests next week to provide an update and a benchmark as to how things are progressing at this point in time. Steven received another platelet transfusion yesterday and his haemoglobin level continues to drop relentlessly. His white count was also down dramatically. While it is important not to focus too intently on this 'number game', the reality is that Steven's new marrow really needs to start producing across all varieties of blood cell and in greater numbers. A real sign of progress would be transfusion independence which still seems to elude him.
During clinic, Dr. Nguyen visited to say she had looked at the lung scan and found that things had improved with the mysterious lesions – so, no bronchoscopy. Steven was mightily relieved! She wished Steven well and hoped never to see him again in pneumology! We really hope so too!
The day clinic was a little disappointing this week as Julien seemed to have been abandoned there to run everything single handedly. Julien is an interne who has a habit of looking baffled and nervous in equal measure. He compensates by being a real sweetheart and is ever so helpful. (I'm sure he'll make a great haematologist one day: he just needs experience.) We arrived at clinic at 9:30 and weren't released until 5:30 – this was the longest and dreariest it's ever been and with the least feedback.
Matthew and I also went to view an apartment yesterday. It is two bedroomed, quite spacious, overlooks the Canal St. Martin, and most importantly it is literally around the corner from the hospital – less than five minutes walk. It really has everything we need, so we decided to take it and will move in there tomorrow afternoon. Our lease on this particular rental will run until December 21st. We are wishing to be homeward bound at least by the Christmas period as it is highly unlikely that a return to Brussels will be possible before then.
That's about all revelation-wise for the moment. We are wishing that Steven remains fever and bacteria free and that his marrow will just leap into action any day now - we know that you are all wishing the same.
Love to all,
Evelyn, Matthew and Steven
Saturday, 20 October 2007
DAY 115
Dear everyone,
Today was quiet and relaxing, thank goodness. We were all up early as the HAD people like to make an early start, particularly at the weekend, it seems. There appears to be a standard team who operate within the various vicinities and you can get any one, or two, of them at a particular time. They are all extremely nice and professional, so absolutely no complaints from us. I think their job must be a very difficult one.
Steven has been in good form today after a good night's sleep. Mostly, he has been pottering around getting his things organised. This takes a bit of doing with all of the crates of drugs he has in his room. We could establish our own pharmacy at this point! He also managed to set up the wireless connection for the apartment. This is always a priority with him as it is his main means of staying in touch with his far flung array of friends. One of the main things that bothers him in hospital is being without his laptop. Only Trèfle 3 offers wireless coverage in St. Louis.
So far, so good, with the temperature, currently hovering at around 37.5˚. Steven appears to be moving about quite well despite being confined for two weeks. Having the back pain under control helps tremendously in this respect. He went out for about a twenty minute walk this afternoon with Matthew and seemed to be fine afterwards. We have now also acquired an exercise bike which should be useful for rainy days when he cannot go outside. Those muscles will not escape regeneration!
This week has been a tough one for the French. Having been crippled by strike action for two days in protest at Sarkozy's proposed public service reforms, it was then announced that their premier was to be divorced from his wife Cécilia. She has since indicated that she couldn't countenance a life of duty and protocol in the spotlight, beside her power crazed husband. (Awfully unattractive package when it's framed like that, I'm sure you'll agree!) Many feel that she has been the 'control tower' behind Sarkozy's enormous success and are consequently very alarmed. I guess, this is a politician you either love or hate. There was a young choirboy-looking nurse (Julien) who was looking after Steven in pneumology, who felt it incumbent upon himself to educate the foreigners (namely us) about Sarkozy's evil master plan to decimate the French health service. Naturally, this young man proudly brandished an 'on strike' banner across his back during the strike action, even though he was working away as usual. The added thorn in this rather bad week was receiving another 'hammering' from the Argentinians in the rugby. The team seemed to have been afflicted by the same curse that hexed the Irish – an overly impassioned desire to win completely destroyed their organisation and shredded their game plan.
More rugby tonight. Good luck to na Sasanaigh!
Love to all,
Evelyn, Matthew and Steven
Today was quiet and relaxing, thank goodness. We were all up early as the HAD people like to make an early start, particularly at the weekend, it seems. There appears to be a standard team who operate within the various vicinities and you can get any one, or two, of them at a particular time. They are all extremely nice and professional, so absolutely no complaints from us. I think their job must be a very difficult one.
Steven has been in good form today after a good night's sleep. Mostly, he has been pottering around getting his things organised. This takes a bit of doing with all of the crates of drugs he has in his room. We could establish our own pharmacy at this point! He also managed to set up the wireless connection for the apartment. This is always a priority with him as it is his main means of staying in touch with his far flung array of friends. One of the main things that bothers him in hospital is being without his laptop. Only Trèfle 3 offers wireless coverage in St. Louis.
So far, so good, with the temperature, currently hovering at around 37.5˚. Steven appears to be moving about quite well despite being confined for two weeks. Having the back pain under control helps tremendously in this respect. He went out for about a twenty minute walk this afternoon with Matthew and seemed to be fine afterwards. We have now also acquired an exercise bike which should be useful for rainy days when he cannot go outside. Those muscles will not escape regeneration!
This week has been a tough one for the French. Having been crippled by strike action for two days in protest at Sarkozy's proposed public service reforms, it was then announced that their premier was to be divorced from his wife Cécilia. She has since indicated that she couldn't countenance a life of duty and protocol in the spotlight, beside her power crazed husband. (Awfully unattractive package when it's framed like that, I'm sure you'll agree!) Many feel that she has been the 'control tower' behind Sarkozy's enormous success and are consequently very alarmed. I guess, this is a politician you either love or hate. There was a young choirboy-looking nurse (Julien) who was looking after Steven in pneumology, who felt it incumbent upon himself to educate the foreigners (namely us) about Sarkozy's evil master plan to decimate the French health service. Naturally, this young man proudly brandished an 'on strike' banner across his back during the strike action, even though he was working away as usual. The added thorn in this rather bad week was receiving another 'hammering' from the Argentinians in the rugby. The team seemed to have been afflicted by the same curse that hexed the Irish – an overly impassioned desire to win completely destroyed their organisation and shredded their game plan.
More rugby tonight. Good luck to na Sasanaigh!
Love to all,
Evelyn, Matthew and Steven
DAY 114
It’s been a strange few days. Paris was hit by a major transport strike which left the roads gridlocked, with no movement on the railways and very little on the metro. This threw our routine into chaos as we are now much further away from the hospital and rely almost totally on the public transport system to get to and fro. It has all been very time consuming and energy draining on a purely practical level. Murphy’s law strikes again! A couple of weeks ago this wouldn’t have mattered at all as we could just hoof it to St. Louis.
The further complication of all of this was that Steven’s exit plans from the hospital all had to be cancelled at the last moment. They could not guarantee that the HAD (home hospital) folk would be able to operate according to schedule in the heavy traffic conditions. As Steven still needs twice daily perfusions of Foscavir, now that the herpes has returned, we only managed to get him home by late afternoon today, instead of the Wednesday evening / Thursday morning, as had been planned. Anyway, the important thing is that he is home with us in our new abode. The HAD nurse has already visited before dinner and everything is now well in hand. Steven is very, very happy and relieved to be home again, needless to say.
They never did find the cause of the discrete temperature highs. Apparently, Steven became quite a topic of conversation both in pneumology and haematology in their striving to find a reason. Eventually, as a last resort, doctors from maladies infectieuses (infectious diseases) and ophthalmology were called in for consultation – all to no avail. Just before we left this afternoon, Bergeron and Nguyen arrived. Bergeron suggested the recent lower grade temperature bumps, just above the normal range, may have been due to the resurgence of the herpes. Who knows?
The plan is that Steven will have a further scan next week to once again check things out in his lungs. Depending on what they see, this may be followed by yet another bronchoscopy which would require an overnight stay in St. Louis. Hopefully this latter eventuality never arises. Outside of this, he will have his usual day at clinic and also attend for any transfusion needs as he is still heavily dependent upon platelets and haemoglobin. It is believed that the recurrent infections are hampering his ability to produce all of his own blood products. However, his white cells are currently above 7,000, with neutrophils near the 4,000 mark. This is good, but may also be his body’s response to fighting off any looming bacteria or viruses.
Hopefully we have now entered a period of lengthy respite from hospitalization.
I will update again soon, to let you all know how things are progressing here in the 16th.
With love,
Evelyn, Matthew and Steven
The further complication of all of this was that Steven’s exit plans from the hospital all had to be cancelled at the last moment. They could not guarantee that the HAD (home hospital) folk would be able to operate according to schedule in the heavy traffic conditions. As Steven still needs twice daily perfusions of Foscavir, now that the herpes has returned, we only managed to get him home by late afternoon today, instead of the Wednesday evening / Thursday morning, as had been planned. Anyway, the important thing is that he is home with us in our new abode. The HAD nurse has already visited before dinner and everything is now well in hand. Steven is very, very happy and relieved to be home again, needless to say.
They never did find the cause of the discrete temperature highs. Apparently, Steven became quite a topic of conversation both in pneumology and haematology in their striving to find a reason. Eventually, as a last resort, doctors from maladies infectieuses (infectious diseases) and ophthalmology were called in for consultation – all to no avail. Just before we left this afternoon, Bergeron and Nguyen arrived. Bergeron suggested the recent lower grade temperature bumps, just above the normal range, may have been due to the resurgence of the herpes. Who knows?
The plan is that Steven will have a further scan next week to once again check things out in his lungs. Depending on what they see, this may be followed by yet another bronchoscopy which would require an overnight stay in St. Louis. Hopefully this latter eventuality never arises. Outside of this, he will have his usual day at clinic and also attend for any transfusion needs as he is still heavily dependent upon platelets and haemoglobin. It is believed that the recurrent infections are hampering his ability to produce all of his own blood products. However, his white cells are currently above 7,000, with neutrophils near the 4,000 mark. This is good, but may also be his body’s response to fighting off any looming bacteria or viruses.
Hopefully we have now entered a period of lengthy respite from hospitalization.
I will update again soon, to let you all know how things are progressing here in the 16th.
With love,
Evelyn, Matthew and Steven
Tuesday, 16 October 2007
DAY 111
Dear all,
I spent the afternoon with Steven. Dr. Nguyen arrived at about threeish to provide us with an update of the general medical opinion.
They have found nothing. The fibre-oscopy was fine and the cardiac ultrasound was completely normal. As Nguyen explained – there is no point in keeping Steven in hospital to watch him heat up and cool down in accordance with these lonesome temperature spikes, so they plan to release him, possibly tomorrow or Thursday. The PCR infection markers in his blood have halved (without antibiotic intervention) and this is also a really good sign.
In the meantime, Steven’s throat feels sore and it looks like the herpes is again on the rise. They took swabs this afternoon to investigate. I think this may mean he goes back on the Foscavir, which is awfully unpleasant but can at least be delivered at home.
We need to wait and see tomorrow what the final story is. All decisions need to be shared and corroborated by haematology, but I don’t think this will be a problem. Steven is nervous that, once at home, he will get another temperature within a really short period, which would undoubtedly dictate re-admittance with the whole investigatory process again kick-started. This notion is a bit daunting and I fully understand his point of view, but he is better off at home even for a 24 hour break rather than languishing in the hospital bed. We need to take confidence and banish these demons of doubt that at times have the ability to hover dangerously!
We are hoping for no last minute snags and that by the next posting he will be already at home and taking a really long breather from the hospital environment.
More tomorrow,
Evelyn, Matthew and Steven
I spent the afternoon with Steven. Dr. Nguyen arrived at about threeish to provide us with an update of the general medical opinion.
They have found nothing. The fibre-oscopy was fine and the cardiac ultrasound was completely normal. As Nguyen explained – there is no point in keeping Steven in hospital to watch him heat up and cool down in accordance with these lonesome temperature spikes, so they plan to release him, possibly tomorrow or Thursday. The PCR infection markers in his blood have halved (without antibiotic intervention) and this is also a really good sign.
In the meantime, Steven’s throat feels sore and it looks like the herpes is again on the rise. They took swabs this afternoon to investigate. I think this may mean he goes back on the Foscavir, which is awfully unpleasant but can at least be delivered at home.
We need to wait and see tomorrow what the final story is. All decisions need to be shared and corroborated by haematology, but I don’t think this will be a problem. Steven is nervous that, once at home, he will get another temperature within a really short period, which would undoubtedly dictate re-admittance with the whole investigatory process again kick-started. This notion is a bit daunting and I fully understand his point of view, but he is better off at home even for a 24 hour break rather than languishing in the hospital bed. We need to take confidence and banish these demons of doubt that at times have the ability to hover dangerously!
We are hoping for no last minute snags and that by the next posting he will be already at home and taking a really long breather from the hospital environment.
More tomorrow,
Evelyn, Matthew and Steven
Monday, 15 October 2007
DAY 110
Hello everyone,
Steven had his bronchial fibre-oscopy at around lunchtime today. Dr. Bergeron did it herself to make ultra sure that nothing was missed and to see for herself what was going on. She told Steven beforehand that she didn’t really expect to find too much amiss but felt they should go ahead with the procedure anyway if for no other reason than to rule out certain possibilities. Steven was not terribly impressed by this rationale as he really hates bronchoscopies and this is the fourth one he’s had since May. He explained afterwards that he has only now just about learned to stay relaxed and manage the spontaneous gagging induced as the tiny camera descends. Having sat outside and listened as this examination proceeds on many occasions, I can tell you it is noisy with lots of very loud directions from the medical personnel and lots of choking sounds from the patients. Very unpleasant! Smokers beware!
Preliminary results indicate that there is nothing visibly problematic in Steven’s lungs. In fact, Bergeron thought they were looking good and healing well after the last pneumonia bout. Results from the lab are still pending regarding any tissues biopsied during this procedure.
Although Steven is feeling fine at the moment and remains fever free, PCR tests (detecting bacterial and viral infections at a molecular level) from his blood still show an increasing number of infection markers in his bloodstream. Medically, these ‘markers’ are viewed as reliable precursors to an infection that is gathering momentum within the body.
Following this rather unproductive encounter with the lung scope, the medical team appears to be a bit bewildered as to what to do next. At about 4:30pm, Steven was rushed off for an impromptu ultrasound of his heart and heart area. I’m not sure what the thinking was behind this, but apparently this imagery also presented normal results.
It is probable that by tomorrow they will have pulled all these strands of information together and come up with a strategy. I am beginning to feel that this will largely involve more biding of time to see what unfolds. Hopefully this ‘biding’ can take place in a home environment.
I have told Steven that he is now truly an international man of mystery – a veritable human conundrum.
Outside of the daily hospital drama, things are fine otherwise. We have settled into our apartment which is located in the diplomatic quarter of Paris. Matthew knows this area quite well as he spends a fair bit of time on trips from Brussels to meetings at the OECD which has its headquarters here, as does the European Union delegation. We have definitely landed in the chic, well dressed and coiffed, and definitely well dined zone of Paris.
I felt genuinely sorry to see France lose in the rugby - although I wasn’t against England by any means, who deserved their win. It was sad to see Chabal ‘bathed in tears’ – the ferocious wild man of rugby obviously has a soft side. We follow all of the rugby on French TV and because there has been so much hype and coverage of the team since we arrived in Paris, the pizzazz really seems to have diminished now that the home team is out. Not quite the same atmosphere.
More news soon,
Evelyn, Matthew and Steven
Steven had his bronchial fibre-oscopy at around lunchtime today. Dr. Bergeron did it herself to make ultra sure that nothing was missed and to see for herself what was going on. She told Steven beforehand that she didn’t really expect to find too much amiss but felt they should go ahead with the procedure anyway if for no other reason than to rule out certain possibilities. Steven was not terribly impressed by this rationale as he really hates bronchoscopies and this is the fourth one he’s had since May. He explained afterwards that he has only now just about learned to stay relaxed and manage the spontaneous gagging induced as the tiny camera descends. Having sat outside and listened as this examination proceeds on many occasions, I can tell you it is noisy with lots of very loud directions from the medical personnel and lots of choking sounds from the patients. Very unpleasant! Smokers beware!
Preliminary results indicate that there is nothing visibly problematic in Steven’s lungs. In fact, Bergeron thought they were looking good and healing well after the last pneumonia bout. Results from the lab are still pending regarding any tissues biopsied during this procedure.
Although Steven is feeling fine at the moment and remains fever free, PCR tests (detecting bacterial and viral infections at a molecular level) from his blood still show an increasing number of infection markers in his bloodstream. Medically, these ‘markers’ are viewed as reliable precursors to an infection that is gathering momentum within the body.
Following this rather unproductive encounter with the lung scope, the medical team appears to be a bit bewildered as to what to do next. At about 4:30pm, Steven was rushed off for an impromptu ultrasound of his heart and heart area. I’m not sure what the thinking was behind this, but apparently this imagery also presented normal results.
It is probable that by tomorrow they will have pulled all these strands of information together and come up with a strategy. I am beginning to feel that this will largely involve more biding of time to see what unfolds. Hopefully this ‘biding’ can take place in a home environment.
I have told Steven that he is now truly an international man of mystery – a veritable human conundrum.
Outside of the daily hospital drama, things are fine otherwise. We have settled into our apartment which is located in the diplomatic quarter of Paris. Matthew knows this area quite well as he spends a fair bit of time on trips from Brussels to meetings at the OECD which has its headquarters here, as does the European Union delegation. We have definitely landed in the chic, well dressed and coiffed, and definitely well dined zone of Paris.
I felt genuinely sorry to see France lose in the rugby - although I wasn’t against England by any means, who deserved their win. It was sad to see Chabal ‘bathed in tears’ – the ferocious wild man of rugby obviously has a soft side. We follow all of the rugby on French TV and because there has been so much hype and coverage of the team since we arrived in Paris, the pizzazz really seems to have diminished now that the home team is out. Not quite the same atmosphere.
More news soon,
Evelyn, Matthew and Steven
DAY 109
Dear everyone,
This is the briefest of updates as it is now very late at night.
Steven had his scan yesterday, Saturday. Based upon what they can see, they feel that there are further spots/lesions on his lungs which are new and which have not been observed previously. All of the antibiotics targeting the lung have now been removed as they want to see how things develop so they can be sure of what they are dealing with, and how to proceed accordingly. So far, Steven has been fever free and this continues to puzzle all.
We saw Dr. Nguyen at around four o’clock today. They now suspect a fungal infection in the lung. This opinion is based upon the latest scan results and the fact that he has fever spikes which are not continuous – this apparently can be somewhat indicative of fungal, or aspergillus, infections. They will do yet another bronchial fibre-oscopy tomorrow morning to investigate further and corroborate their suspicions.
None of this is good news. Lung difficulties are notoriously negative in post transplant recovery. Nonetheless, we hope for the best, and we continue to have great confidence in Steven’s resilience and the fact that he continues to mystify everyone at every turn throughout all of his medical history.
Steven is utterly ‘fed up’ with this situation and is just so anxious to get our of the hospital environment and continue on his road toward better health.
In this post transplant situation where it is difficult to have total trust in the medical profession, as so much is yet unknown, we have every confidence in Doctors Bergeron and Nguyen. They are both totally patient focused and are striving to solve this situation for Steven. We can only wait and see how things transpire.
More later,
Evelyn, Matthew and Steven.
This is the briefest of updates as it is now very late at night.
Steven had his scan yesterday, Saturday. Based upon what they can see, they feel that there are further spots/lesions on his lungs which are new and which have not been observed previously. All of the antibiotics targeting the lung have now been removed as they want to see how things develop so they can be sure of what they are dealing with, and how to proceed accordingly. So far, Steven has been fever free and this continues to puzzle all.
We saw Dr. Nguyen at around four o’clock today. They now suspect a fungal infection in the lung. This opinion is based upon the latest scan results and the fact that he has fever spikes which are not continuous – this apparently can be somewhat indicative of fungal, or aspergillus, infections. They will do yet another bronchial fibre-oscopy tomorrow morning to investigate further and corroborate their suspicions.
None of this is good news. Lung difficulties are notoriously negative in post transplant recovery. Nonetheless, we hope for the best, and we continue to have great confidence in Steven’s resilience and the fact that he continues to mystify everyone at every turn throughout all of his medical history.
Steven is utterly ‘fed up’ with this situation and is just so anxious to get our of the hospital environment and continue on his road toward better health.
In this post transplant situation where it is difficult to have total trust in the medical profession, as so much is yet unknown, we have every confidence in Doctors Bergeron and Nguyen. They are both totally patient focused and are striving to solve this situation for Steven. We can only wait and see how things transpire.
More later,
Evelyn, Matthew and Steven.
Friday, 12 October 2007
DAY 107
Dear all,
It seems like an eternity since I posted anything. I'm surprised to see that only three days have elapsed since the last communication. This absence of information is due to the fact that we have had to move apartment. The difficulty with short term fully furnished rentals in Paris is that the lease always has to be signed for a definitive period of time, and specific dates may be booked up to a year in advance. To really make this situation work effectively, it is important to know in advance the exact stay of time required. As you may have understood by now, the post transplant recovery period is quite indefinite and really is anyone's guess. This is how we found ourselves in a situation where, with new tenants for our place waiting in the wings, our lease ran out, leaving us with very few other rental options. So, we have now moved right across Paris to the 16th arrondissement, near the Eiffel Tower and the Arc de Triomphe, to a smaller and much less convenient location (for hospital access), but, at least we have a roof over our heads! We will stay here until the end of October, when we will move back nearer the hospital to a bigger place. I tell you, 'the fun never stops' here!!
Since last Tuesday, Steven has been fine, really. He had an MRI scan to look more closely at the back pain issue on Wednesday and nothing was found amiss. All of the blood cultures for bacterial infection were returned negative – no sign of infection. His temperature remained stable and everyone was confident he was en route for home today – until this morning, when his temperature once again rose to nearly 40˚, with high blood pressure and 'lowish' oxygen. All plans for discharge were rapidly abandoned leaving Steven and us, very, very disappointed. To use a Stevenism - "What can you do?"
Doctors Bergeron and Nguyen seemed very puzzled by the situation when we saw them this afternoon. They cannot identify any sign of infection and bizarrely Steven feels quite well with no specific symptoms or complaints. They decided that he needs to remain in hospital for monitoring at least until Monday. Yet another scan has been ordered just to be sure there is nothing new evolving in the lungs. Apparently, a temperature rise could also signal the beginning of graft versus host disease (something we really, and I stress really, really don't need!) but Steven has absolutely no sign of this apart from his lividly red palms, which never improved.
I spent the afternoon with Steven. Dr. Robin (from haematology) arrived towards six o' clock. She examined Steven and was very sympathetic. She also explained that it is 'unusual' that a patient who is so far post transplant, with reasonable white cell counts, presents with a high temperature which cannot be linked to a specific problem.
At this point, Steven feels he is being kept in hospital for 'no good reason' as there appears to be nothing wrong with him! The doctors would see this differently as their methods are all about maintaining stability and preventing the onset of major problems. We all agree that it was best he had his temperature this morning – there would be nothing more frustrating than being released, then having to return the following day with a soaring temperature.
That's all the news for now.
Love to all,
Evelyn, Matthew and Steven
It seems like an eternity since I posted anything. I'm surprised to see that only three days have elapsed since the last communication. This absence of information is due to the fact that we have had to move apartment. The difficulty with short term fully furnished rentals in Paris is that the lease always has to be signed for a definitive period of time, and specific dates may be booked up to a year in advance. To really make this situation work effectively, it is important to know in advance the exact stay of time required. As you may have understood by now, the post transplant recovery period is quite indefinite and really is anyone's guess. This is how we found ourselves in a situation where, with new tenants for our place waiting in the wings, our lease ran out, leaving us with very few other rental options. So, we have now moved right across Paris to the 16th arrondissement, near the Eiffel Tower and the Arc de Triomphe, to a smaller and much less convenient location (for hospital access), but, at least we have a roof over our heads! We will stay here until the end of October, when we will move back nearer the hospital to a bigger place. I tell you, 'the fun never stops' here!!
Since last Tuesday, Steven has been fine, really. He had an MRI scan to look more closely at the back pain issue on Wednesday and nothing was found amiss. All of the blood cultures for bacterial infection were returned negative – no sign of infection. His temperature remained stable and everyone was confident he was en route for home today – until this morning, when his temperature once again rose to nearly 40˚, with high blood pressure and 'lowish' oxygen. All plans for discharge were rapidly abandoned leaving Steven and us, very, very disappointed. To use a Stevenism - "What can you do?"
Doctors Bergeron and Nguyen seemed very puzzled by the situation when we saw them this afternoon. They cannot identify any sign of infection and bizarrely Steven feels quite well with no specific symptoms or complaints. They decided that he needs to remain in hospital for monitoring at least until Monday. Yet another scan has been ordered just to be sure there is nothing new evolving in the lungs. Apparently, a temperature rise could also signal the beginning of graft versus host disease (something we really, and I stress really, really don't need!) but Steven has absolutely no sign of this apart from his lividly red palms, which never improved.
I spent the afternoon with Steven. Dr. Robin (from haematology) arrived towards six o' clock. She examined Steven and was very sympathetic. She also explained that it is 'unusual' that a patient who is so far post transplant, with reasonable white cell counts, presents with a high temperature which cannot be linked to a specific problem.
At this point, Steven feels he is being kept in hospital for 'no good reason' as there appears to be nothing wrong with him! The doctors would see this differently as their methods are all about maintaining stability and preventing the onset of major problems. We all agree that it was best he had his temperature this morning – there would be nothing more frustrating than being released, then having to return the following day with a soaring temperature.
That's all the news for now.
Love to all,
Evelyn, Matthew and Steven
Tuesday, 9 October 2007
DAY 104
Dear all,
Steven is still in the hospital. Yesterday, Monday, was fairly uneventful and there was nothing really enlightening to report. In the end, the planned fibreoscopy was cancelled, and was replaced by an ultrasound of the vein system in Steven’s upper right chest area (ie. surrounding the central line). This test was performed to rule out the possibility of a potential infection migrating from the central catheter into the veins. They had already analysed the line itself and had found that it contained no bacteria of note. The results regarding the veins were very clear and no problem was identified. As a result, Steven’s central line was put back in action today, which is always a relief as it is a much more comfortable means of receiving transfusions.
Matthew and I met with Prof. Socié this morning and with Dr. Bergeron, who is the head of the pneumology service this afternoon. The general viewpoint is fairly positive. Based upon the evidence from the lung scan, everyone is quite sure that there is no pneumonia present and there is no active infection in the lung. The spots visible on the scan are felt to be either scarring from the last pneumonia outbreak, or new spots which may have harboured some mild form of infection, which they now believe to be under control. Dr. Bergeron explained that the temperature highs may be just normal post transplant reactions of the body to high dosage drugs, or, could be some fleeting but insignificant virus. She was really very reassuring and explained that half of the patients in her unit are post transplant cases: she obviously has a lot of experience in this respect. The plan is that several antibiotics will now be removed from the drugs regimen, and Steven’s reaction will be closely monitored.
Nobody has offered any easy solutions to the problem of physical exercise. Several weeks of high sodium content Foscavir (herpes anti-viral) have really combined with the steroid intake to exacerbate the problem of body swelling and high blood pressure. It has also added a new dimension of feeling nervous and jittery along with muscle spasms. Thankfully, this medication ended today as the herpes is no longer active. They will once again reduce the steroids by the end of this week. Apart from modifying his drug treatment, their advice regarding muscle depletion and severe back pain is to ‘bite the bullet’ and, once home, start walking and exercising again.
Steven continues to be a little slow in his reactions. Apparently, the morphine intake is definitely the culprit here. Again there is no easy solution as Steven really needs this to control his pain, which is still very intense. Another scan is planned to look more closely at this more localized back problem.
Increasingly, it is looking like we may need to remain in Paris until Christmas.
Love to all,
Evelyn, Matthew and Steven
Steven is still in the hospital. Yesterday, Monday, was fairly uneventful and there was nothing really enlightening to report. In the end, the planned fibreoscopy was cancelled, and was replaced by an ultrasound of the vein system in Steven’s upper right chest area (ie. surrounding the central line). This test was performed to rule out the possibility of a potential infection migrating from the central catheter into the veins. They had already analysed the line itself and had found that it contained no bacteria of note. The results regarding the veins were very clear and no problem was identified. As a result, Steven’s central line was put back in action today, which is always a relief as it is a much more comfortable means of receiving transfusions.
Matthew and I met with Prof. Socié this morning and with Dr. Bergeron, who is the head of the pneumology service this afternoon. The general viewpoint is fairly positive. Based upon the evidence from the lung scan, everyone is quite sure that there is no pneumonia present and there is no active infection in the lung. The spots visible on the scan are felt to be either scarring from the last pneumonia outbreak, or new spots which may have harboured some mild form of infection, which they now believe to be under control. Dr. Bergeron explained that the temperature highs may be just normal post transplant reactions of the body to high dosage drugs, or, could be some fleeting but insignificant virus. She was really very reassuring and explained that half of the patients in her unit are post transplant cases: she obviously has a lot of experience in this respect. The plan is that several antibiotics will now be removed from the drugs regimen, and Steven’s reaction will be closely monitored.
Nobody has offered any easy solutions to the problem of physical exercise. Several weeks of high sodium content Foscavir (herpes anti-viral) have really combined with the steroid intake to exacerbate the problem of body swelling and high blood pressure. It has also added a new dimension of feeling nervous and jittery along with muscle spasms. Thankfully, this medication ended today as the herpes is no longer active. They will once again reduce the steroids by the end of this week. Apart from modifying his drug treatment, their advice regarding muscle depletion and severe back pain is to ‘bite the bullet’ and, once home, start walking and exercising again.
Steven continues to be a little slow in his reactions. Apparently, the morphine intake is definitely the culprit here. Again there is no easy solution as Steven really needs this to control his pain, which is still very intense. Another scan is planned to look more closely at this more localized back problem.
Increasingly, it is looking like we may need to remain in Paris until Christmas.
Love to all,
Evelyn, Matthew and Steven
Sunday, 7 October 2007
DAY 102
Dear all,
Double cord blood transplants are truly a wondrous thing. They enable those who cannot find a suitable bone marrow match to move forward and benefit from life saving treatment. The technique for these transplants has progressed in leaps and bounds since the very first one was performed in 1988 by Prof. Eliane Gluckman, in the Hôpital St. Louis, on a child who had Fanconi anaemia. The downside of this particular type of transplant is that although cord blood stem cells are pluripotent (ie. capable of developing into many cell types, particularly blood cells) they are literally baby cells. As such, they are slower to engraft into the marrow, and once there, they take a much, much longer period of time to set up a viable and resistant immune system. During this period of time, the recipient of a cord blood graft is quite susceptible to the many infections which can arise spontaneously from within their own systems, or from outside sources. This is the scenario into which Steven is now mired, and this is the overwhelming challenge faced.
We managed to keep our appointment on Friday morning at the hôpital de jour. Steven had woken up with a temperature and by the time he was reclining in a bed in the clinic, his temperature had risen to almost 40°. Luckily, this temperature crisis coincided with our weekly rendezvous, so we did not have to be traumatized by another ‘Urgences’ experience. Dr. Robin and Julien (interne) were on duty. It was immediately proclaimed that Steven would be going nowhere outside of the hospital until they had found the source of this new infection. Their best guess was the lungs (quelle surprise!) or the central line (again quelle surprise!). The waiting game and the related high stress factor were once again shot into motion. By late afternoon, Steven found himself back in Coquelicot 5 (pneumology) wired up to a variety of antibiotics, being fed through his arm because they could not use the central line due to the threat of a lurking infection which could then potentially be pushed through into his blood. This is very awkward as Steven literally has no veins left in his arms and they have to best guess their location in order to insert the transfusion line.
A scan was performed yesterday morning. The latest opinion is that he has recurring pneumonia in his left lung. This may be residual from the last bout (a tiny spot that remained undetected the last time they looked around in his lungs) or a new outbreak of the same old problem. Another bronchoscopy may be in the offing on Monday morning.
At the moment, Steven is fever free since Friday evening. He is doing a lot of sleeping and is slightly confused, mostly due to the morphine intake, I feel. Here in pneumology, they have told Steven that this is not a serious bout of pneumonia. Matthew and I need to check this out further, but that means waiting until Monday when a full staff is available and we can have an appointment with one of the consultants. The strange thing is that during all of his lung complications, from lung herpes to this third tangle with pneumonia, Steven hasn’t even had a cough. Once he receives antibiotics, his fever drops and he doesn’t even appear to be ill.
So, once again, we are thrown back into the hospital routine and, as you all know, Steven hates being in the hospital. We also have the dilemma of what to do about exercise. Being confined to a small room, even for a short period, is not going to help his back problem and will only further weaken his muscles. He is not allowed to go ‘walk-about’ at the moment.
With double matches of rugby scheduled for both yesterday and today, at least there is something to watch on TV. In the absence of the ‘cringe-making’ Irish (who seemed to have lost both the plot and the run of themselves throughout this championship) I say ‘Allez l’Europe!’ It would be nice to see a northern hemisphere champion.
From today, I will update this site briefly, but more regularly.
With love,
Evelyn, Matthew and Steven
Double cord blood transplants are truly a wondrous thing. They enable those who cannot find a suitable bone marrow match to move forward and benefit from life saving treatment. The technique for these transplants has progressed in leaps and bounds since the very first one was performed in 1988 by Prof. Eliane Gluckman, in the Hôpital St. Louis, on a child who had Fanconi anaemia. The downside of this particular type of transplant is that although cord blood stem cells are pluripotent (ie. capable of developing into many cell types, particularly blood cells) they are literally baby cells. As such, they are slower to engraft into the marrow, and once there, they take a much, much longer period of time to set up a viable and resistant immune system. During this period of time, the recipient of a cord blood graft is quite susceptible to the many infections which can arise spontaneously from within their own systems, or from outside sources. This is the scenario into which Steven is now mired, and this is the overwhelming challenge faced.
We managed to keep our appointment on Friday morning at the hôpital de jour. Steven had woken up with a temperature and by the time he was reclining in a bed in the clinic, his temperature had risen to almost 40°. Luckily, this temperature crisis coincided with our weekly rendezvous, so we did not have to be traumatized by another ‘Urgences’ experience. Dr. Robin and Julien (interne) were on duty. It was immediately proclaimed that Steven would be going nowhere outside of the hospital until they had found the source of this new infection. Their best guess was the lungs (quelle surprise!) or the central line (again quelle surprise!). The waiting game and the related high stress factor were once again shot into motion. By late afternoon, Steven found himself back in Coquelicot 5 (pneumology) wired up to a variety of antibiotics, being fed through his arm because they could not use the central line due to the threat of a lurking infection which could then potentially be pushed through into his blood. This is very awkward as Steven literally has no veins left in his arms and they have to best guess their location in order to insert the transfusion line.
A scan was performed yesterday morning. The latest opinion is that he has recurring pneumonia in his left lung. This may be residual from the last bout (a tiny spot that remained undetected the last time they looked around in his lungs) or a new outbreak of the same old problem. Another bronchoscopy may be in the offing on Monday morning.
At the moment, Steven is fever free since Friday evening. He is doing a lot of sleeping and is slightly confused, mostly due to the morphine intake, I feel. Here in pneumology, they have told Steven that this is not a serious bout of pneumonia. Matthew and I need to check this out further, but that means waiting until Monday when a full staff is available and we can have an appointment with one of the consultants. The strange thing is that during all of his lung complications, from lung herpes to this third tangle with pneumonia, Steven hasn’t even had a cough. Once he receives antibiotics, his fever drops and he doesn’t even appear to be ill.
So, once again, we are thrown back into the hospital routine and, as you all know, Steven hates being in the hospital. We also have the dilemma of what to do about exercise. Being confined to a small room, even for a short period, is not going to help his back problem and will only further weaken his muscles. He is not allowed to go ‘walk-about’ at the moment.
With double matches of rugby scheduled for both yesterday and today, at least there is something to watch on TV. In the absence of the ‘cringe-making’ Irish (who seemed to have lost both the plot and the run of themselves throughout this championship) I say ‘Allez l’Europe!’ It would be nice to see a northern hemisphere champion.
From today, I will update this site briefly, but more regularly.
With love,
Evelyn, Matthew and Steven
Tuesday, 2 October 2007
DAY 97
Dear everyone,
Steven and I have just returned from spending an impromptu afternoon at the hospital. As his platelets were 20,000 yesterday, they decided upon a transfusion today. At the minute, twice weekly seems to be the requirement for the said platelets, so this sets him up nicely for another session, come Friday's hôpital de jour.
Yesterday, Monday, was not a good day pain-wise. Steven spent the morning in bed, driven there by intense discomfort in his back. Matthew contacted Dr. Robin at St. Louis to explain that the latest adaptations to his regimen (ie. courtesy of Dr. Rocha during Friday's clinic) were not really working and the pain was again on the increase. She felt that the only remaining effective drug that we could now resort to was morphine, in tablet form. Another overhaul of his burgeoning medicine cabinet followed - this time to include morphine and a muscle relaxant, while removing some other meds …… I tell you, this medication merry-go-round never stops!
The net effect of all of this is that Steven is now relatively pain free! It has not disappeared but it is hugely relieved. The really positive thing about the absence of pain is that it physically enables him to focus comfortably on increasing his physical activity level. It's quite a catch 22 situation when the pain level stymies attempts at exercise, yet exercise is the very thing that's needed to loosen the muscles and diminish the pain.
We spent a good deal of time with Dr. Robin and Julien (interne) today. Both feel that while it is unusual to need such strong pain relief for muscular problems, they are 100% convinced (following a detailed physical, testing his back bone, muscles and reflexes) that the pain is muscular in origin. They are completely satisfied that with the continuous tapering of the steroids, combined with a normal activity level, all will be well. Steven has been out walking twice today and spent a lot of time on his feet at the hospital, so, he has done very well.
A blood draw yesterday showed that the white cells have again bounced upwards to 3,500, with haemoglobin of 9.4. There are no further traces of herpes in the blood, just in his throat. Steven's temperature has been stable since last Wednesday. He has 95% chimerism for one of the cord bloods – we still don't know which one.
I would just like assure everyone that we are not too horrified to have to remain in Paris for a lengthier period. Paris is truly a beautiful city, although it is a pity that we are not experiencing it under more joyous circumstances. I can honestly say that while our life here is pared back to a most basic daily routine (ie. we are not out partying, dining and sightseeing) I really think it is a great place to live. Our apartment is very comfortable and we live in a multi-ethnic café society neighbourhood (large Jewish, Arab, African and oriental communities) which is always alive and bustling with activity. It is not hardship, by any means.
That's about all the news for the moment. Now, I simply must go and practise my 'soixante dixes' and 'quatre vingt dixes' ……. you are truly lost without them in Paris!
Love to all,
Evelyn, Matthew and Steven
Steven and I have just returned from spending an impromptu afternoon at the hospital. As his platelets were 20,000 yesterday, they decided upon a transfusion today. At the minute, twice weekly seems to be the requirement for the said platelets, so this sets him up nicely for another session, come Friday's hôpital de jour.
Yesterday, Monday, was not a good day pain-wise. Steven spent the morning in bed, driven there by intense discomfort in his back. Matthew contacted Dr. Robin at St. Louis to explain that the latest adaptations to his regimen (ie. courtesy of Dr. Rocha during Friday's clinic) were not really working and the pain was again on the increase. She felt that the only remaining effective drug that we could now resort to was morphine, in tablet form. Another overhaul of his burgeoning medicine cabinet followed - this time to include morphine and a muscle relaxant, while removing some other meds …… I tell you, this medication merry-go-round never stops!
The net effect of all of this is that Steven is now relatively pain free! It has not disappeared but it is hugely relieved. The really positive thing about the absence of pain is that it physically enables him to focus comfortably on increasing his physical activity level. It's quite a catch 22 situation when the pain level stymies attempts at exercise, yet exercise is the very thing that's needed to loosen the muscles and diminish the pain.
We spent a good deal of time with Dr. Robin and Julien (interne) today. Both feel that while it is unusual to need such strong pain relief for muscular problems, they are 100% convinced (following a detailed physical, testing his back bone, muscles and reflexes) that the pain is muscular in origin. They are completely satisfied that with the continuous tapering of the steroids, combined with a normal activity level, all will be well. Steven has been out walking twice today and spent a lot of time on his feet at the hospital, so, he has done very well.
A blood draw yesterday showed that the white cells have again bounced upwards to 3,500, with haemoglobin of 9.4. There are no further traces of herpes in the blood, just in his throat. Steven's temperature has been stable since last Wednesday. He has 95% chimerism for one of the cord bloods – we still don't know which one.
I would just like assure everyone that we are not too horrified to have to remain in Paris for a lengthier period. Paris is truly a beautiful city, although it is a pity that we are not experiencing it under more joyous circumstances. I can honestly say that while our life here is pared back to a most basic daily routine (ie. we are not out partying, dining and sightseeing) I really think it is a great place to live. Our apartment is very comfortable and we live in a multi-ethnic café society neighbourhood (large Jewish, Arab, African and oriental communities) which is always alive and bustling with activity. It is not hardship, by any means.
That's about all the news for the moment. Now, I simply must go and practise my 'soixante dixes' and 'quatre vingt dixes' ……. you are truly lost without them in Paris!
Love to all,
Evelyn, Matthew and Steven
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