Dear everyone,
Our darling Steven passed away in our arms this afternoon at 3pm, surrounded by our deep, deep love and tenderness.
Evelyn, Matthew, Feargal and Aideen
PS: Once final arrangements have been organized, the details will be posted on this website.
Wednesday, 28 November 2007
Tuesday, 27 November 2007
DAY 155
Dear everyone,
We were back in hospital four weeks since yesterday. For all of those weeks Steven has been suffering immensely both physically and mentally.
Since Sunday there has been a steady, further deterioration of his condition. Until last night Steven was both very agitated and upset - very distressing for us, but much moreso for Steven.
Yesterday morning, we were called by de Latour. The GVHD has overwhelmed Steven’s body and his lungs, liver and kidney have all been strongly hit. The prognosis is that we have only a few days left. They are trying to make Steven as comfortable as possible – mostly this means increased painkillers and a high level of sedation. Nothing more can be done for him.
Heartbroken, does not come near how we feel. A life without Steven is unimaginable.
My niece, Aideen has been here since Sunday (looking after us) and Feargal arrived last night.
Don’t expect daily updates from here on – this has been impossible to write.
Love to all,
Evelyn, Matthew, Steven, Feargal and Aideen
We were back in hospital four weeks since yesterday. For all of those weeks Steven has been suffering immensely both physically and mentally.
Since Sunday there has been a steady, further deterioration of his condition. Until last night Steven was both very agitated and upset - very distressing for us, but much moreso for Steven.
Yesterday morning, we were called by de Latour. The GVHD has overwhelmed Steven’s body and his lungs, liver and kidney have all been strongly hit. The prognosis is that we have only a few days left. They are trying to make Steven as comfortable as possible – mostly this means increased painkillers and a high level of sedation. Nothing more can be done for him.
Heartbroken, does not come near how we feel. A life without Steven is unimaginable.
My niece, Aideen has been here since Sunday (looking after us) and Feargal arrived last night.
Don’t expect daily updates from here on – this has been impossible to write.
Love to all,
Evelyn, Matthew, Steven, Feargal and Aideen
Saturday, 24 November 2007
DAY 151
Dear everyone,
Steven continues to be very weak and today was another difficult experience all round.
Matthew and I met with Prof. Socié on Friday afternoon who provided us with a ‘master class’ on GVHD and kidney function. It was all very informative in terms of Steven’s specific situation. There is nobody like Socié to level a scenario down to basic essentials and be totally objective about them. He was not totally despondent, although not entirely optimistic. The message was that while Steven has not responded wholeheartedly to the steroid treatment, he has not been entirely resistant either in that the GVHD has been arrested, but not alleviated. We need to wait and see what the weekend and Monday brings, before things are clearer.
Steven was absolutely tired today and couldn’t stay awake at all. We have been with him all day, wishing him and loving him better.
Love to all,
Evelyn, Matthew, Steven and Ellen
Steven continues to be very weak and today was another difficult experience all round.
Matthew and I met with Prof. Socié on Friday afternoon who provided us with a ‘master class’ on GVHD and kidney function. It was all very informative in terms of Steven’s specific situation. There is nobody like Socié to level a scenario down to basic essentials and be totally objective about them. He was not totally despondent, although not entirely optimistic. The message was that while Steven has not responded wholeheartedly to the steroid treatment, he has not been entirely resistant either in that the GVHD has been arrested, but not alleviated. We need to wait and see what the weekend and Monday brings, before things are clearer.
Steven was absolutely tired today and couldn’t stay awake at all. We have been with him all day, wishing him and loving him better.
Love to all,
Evelyn, Matthew, Steven and Ellen
Friday, 23 November 2007
DAY 150
Dear everyone,
Things today have been more or less the same as yesterday, with no recent developments. As we are all very tired here, I will postpone a more thorough update until tomorrow.
Love to all,
Evelyn, Matthew, Steven and Ellen
Things today have been more or less the same as yesterday, with no recent developments. As we are all very tired here, I will postpone a more thorough update until tomorrow.
Love to all,
Evelyn, Matthew, Steven and Ellen
Thursday, 22 November 2007
DAY 149
Dear everyone,
Ellen arrived last night without any delays from the extensive strike action, so that was a relief. It’s really good to see her again.
I think that Steven is more tired than ever today and looking really poorly. Matthew and I met with Dr. de Latour and Anna this afternoon. They outlined a prognosis which is not exactly encouraging: Steven continues to be in a really grave and very fragile condition. He is now having difficulty with kidney function and they are really concerned about this. It is considered that the lungs and liver, although still problematic, are more or less stable. What they hope to see over the coming weekend is less toxicity in the kidney (from all of the drugs) and a stomach which is functioning independently of the NG tube.
They will continue the treatment until Tuesday, which is the three week mark, and after that they will taper the steroids. If things have not improved by then they feel that Steven is probably too weak now to endure an alternative treatment which would introduce new levels of toxicity and side effects for all of his organs.
We need to wait and see over the next few days and continue to hope in Steven’s favour.
Love to all,
Evelyn, Matthew, Steven and Ellen
Ellen arrived last night without any delays from the extensive strike action, so that was a relief. It’s really good to see her again.
I think that Steven is more tired than ever today and looking really poorly. Matthew and I met with Dr. de Latour and Anna this afternoon. They outlined a prognosis which is not exactly encouraging: Steven continues to be in a really grave and very fragile condition. He is now having difficulty with kidney function and they are really concerned about this. It is considered that the lungs and liver, although still problematic, are more or less stable. What they hope to see over the coming weekend is less toxicity in the kidney (from all of the drugs) and a stomach which is functioning independently of the NG tube.
They will continue the treatment until Tuesday, which is the three week mark, and after that they will taper the steroids. If things have not improved by then they feel that Steven is probably too weak now to endure an alternative treatment which would introduce new levels of toxicity and side effects for all of his organs.
We need to wait and see over the next few days and continue to hope in Steven’s favour.
Love to all,
Evelyn, Matthew, Steven and Ellen
Wednesday, 21 November 2007
DAY 148
Dear everyone,
Steven has been very tired all day today, mostly sleeping, with oxygen and the NG tube still actively in place. He is back to having platelet transfusions twice daily which is a relief as this has the best positive effect on the gastrointestinal bleeding.
The ‘pain team’ arrived this afternoon to review some of his pain relief history and decide what is the best way forward, given Socié’s recommendation to reduce the morphine. They are doing a 24 hour trial run of ketamine and oxynorm which are both very strong painkillers but which may suit Steven’s needs more appropriately for the moment.
The physiotherapist was also in for a second day in a row to try to clear the lungs of any fluid build up. They really do this quite effectively through a series of very specific exercises.
In general, today has been rather quiet with no real developments to report. Ellen is arriving this evening, flying in from Liverpool, so we are looking forward to her company over the coming days.
Love to all,
Evelyn, Matthew and Steven
Steven has been very tired all day today, mostly sleeping, with oxygen and the NG tube still actively in place. He is back to having platelet transfusions twice daily which is a relief as this has the best positive effect on the gastrointestinal bleeding.
The ‘pain team’ arrived this afternoon to review some of his pain relief history and decide what is the best way forward, given Socié’s recommendation to reduce the morphine. They are doing a 24 hour trial run of ketamine and oxynorm which are both very strong painkillers but which may suit Steven’s needs more appropriately for the moment.
The physiotherapist was also in for a second day in a row to try to clear the lungs of any fluid build up. They really do this quite effectively through a series of very specific exercises.
In general, today has been rather quiet with no real developments to report. Ellen is arriving this evening, flying in from Liverpool, so we are looking forward to her company over the coming days.
Love to all,
Evelyn, Matthew and Steven
Tuesday, 20 November 2007
DAY 147
Dear everyone,
We’re still trying to survive through the ‘eye of the storm’ here with Steven. Unfortunately there seems to be no let up.
Socié and entourage were around this afternoon. He feels that there is improvement and that the contents from the stomach evacuation are now near normal expectations. They are still reluctant to remove the NG tube as there is a fear of inhalation or contamination from the stomach contents into the lung, during potential nausea, which could be dangerous. They also need to be more convinced that the stomach is capable of emptying itself and so far there is no evidence that this is the case. The recommendation is that the morphine consumption is reduced as it can have a slowing effect on the GI system. On the other hand morphine also opens up the alveoli in the lungs which helps the breathing mechanism, and, Steven is still on oxygen. It’s all a fine balance really. We expect a visit from the pain control team tomorrow who possibly will have more specific suggestions.
In general, Steven was slightly livelier today although still doing a lot of sleeping. He sat out for a bit and did a few mini walks around the room. You wouldn’t believe how taxing all of this is for him at the moment.
The results from the most recent scan would seem to indicate a problem in the lower left lung. Sounds familiar, right? They suspect a lung infection which would add to the endless list of worries. I am hoping that this may be just another bogus scare derived from inconclusive lung imagery as an infection now, with such low resistance, would not be a good scenario.
We continue to live in hope and rely on what might be just possible as opposed to what is actual. Steven so frequently and so heartbreakingly seems to fall into the minority group in the negative sense. One of the great boasts about cord blood transplants is that there is significantly reduced graft versus host disease and those who do get it experience only a mild form of the condition. Well, Steven is in the minority of cases to acquire ‘severe’ GVHD post transplant. We need to live in trust that one of these days the odds will turn around and work dramatically in his favour.
The strike in Paris is very wide-ranging at the moment and does affect hospitals. In St. Louis, those who are on strike wear banners across their backs stating they are supporting the action; however, they are still actively at work. In Tréfle 3, which is a bit of an island unto itself, I have not seen any banners – I think it might be considered a bit indelicate to indicate strike support in these surroundings. So, no worries.
Love to all,
Evelyn, Matthew and Steven
We’re still trying to survive through the ‘eye of the storm’ here with Steven. Unfortunately there seems to be no let up.
Socié and entourage were around this afternoon. He feels that there is improvement and that the contents from the stomach evacuation are now near normal expectations. They are still reluctant to remove the NG tube as there is a fear of inhalation or contamination from the stomach contents into the lung, during potential nausea, which could be dangerous. They also need to be more convinced that the stomach is capable of emptying itself and so far there is no evidence that this is the case. The recommendation is that the morphine consumption is reduced as it can have a slowing effect on the GI system. On the other hand morphine also opens up the alveoli in the lungs which helps the breathing mechanism, and, Steven is still on oxygen. It’s all a fine balance really. We expect a visit from the pain control team tomorrow who possibly will have more specific suggestions.
In general, Steven was slightly livelier today although still doing a lot of sleeping. He sat out for a bit and did a few mini walks around the room. You wouldn’t believe how taxing all of this is for him at the moment.
The results from the most recent scan would seem to indicate a problem in the lower left lung. Sounds familiar, right? They suspect a lung infection which would add to the endless list of worries. I am hoping that this may be just another bogus scare derived from inconclusive lung imagery as an infection now, with such low resistance, would not be a good scenario.
We continue to live in hope and rely on what might be just possible as opposed to what is actual. Steven so frequently and so heartbreakingly seems to fall into the minority group in the negative sense. One of the great boasts about cord blood transplants is that there is significantly reduced graft versus host disease and those who do get it experience only a mild form of the condition. Well, Steven is in the minority of cases to acquire ‘severe’ GVHD post transplant. We need to live in trust that one of these days the odds will turn around and work dramatically in his favour.
The strike in Paris is very wide-ranging at the moment and does affect hospitals. In St. Louis, those who are on strike wear banners across their backs stating they are supporting the action; however, they are still actively at work. In Tréfle 3, which is a bit of an island unto itself, I have not seen any banners – I think it might be considered a bit indelicate to indicate strike support in these surroundings. So, no worries.
Love to all,
Evelyn, Matthew and Steven
Monday, 19 November 2007
DAY 146
Dear everyone,
Today has been pretty much the same as recent days with no great changes. Steven still has the NG tube and the oxygen mask to ease his breathing.
This morning Dr. de Latour and Anna did their rounds. Latour explained that for the moment the treatment will remain as is, with no increase or decrease in the current medications. They are concerned again about Steven’s lungs now that they are harbouring some fluid. Another x-ray and scan were performed to ensure there is no infection. This is a growing concern now that Steven is on high dosage prednisone (steroid) which acts as an immunosuppressive, and leaves him susceptible to many potential infections.
The NG tube has been pumping blood most of the day as they ran out of platelets – there is an ongoing problem with platelet availability in Paris. So instead of 12 hourly transfusions, Steven has had to wait more than 24 hours to be topped up. Not anybody’s fault really, just the age old difficulty in getting donors for blood products. It takes a few hours to harvest platelets and not everybody is willing to block this amount of time into a busy schedule. If any of you are interested, you should contact your blood donation service as people’s lives really do depend on their availability.
I will leave it at that for this evening as we are all very tired.
Love to all,
Evelyn, Matthew and Steven
Today has been pretty much the same as recent days with no great changes. Steven still has the NG tube and the oxygen mask to ease his breathing.
This morning Dr. de Latour and Anna did their rounds. Latour explained that for the moment the treatment will remain as is, with no increase or decrease in the current medications. They are concerned again about Steven’s lungs now that they are harbouring some fluid. Another x-ray and scan were performed to ensure there is no infection. This is a growing concern now that Steven is on high dosage prednisone (steroid) which acts as an immunosuppressive, and leaves him susceptible to many potential infections.
The NG tube has been pumping blood most of the day as they ran out of platelets – there is an ongoing problem with platelet availability in Paris. So instead of 12 hourly transfusions, Steven has had to wait more than 24 hours to be topped up. Not anybody’s fault really, just the age old difficulty in getting donors for blood products. It takes a few hours to harvest platelets and not everybody is willing to block this amount of time into a busy schedule. If any of you are interested, you should contact your blood donation service as people’s lives really do depend on their availability.
I will leave it at that for this evening as we are all very tired.
Love to all,
Evelyn, Matthew and Steven
Sunday, 18 November 2007
DAY 145
Dear everyone,
Another weekend bites the dust in Trèfle 3. We feel that we are practically living here at this point. The walls, floors, machine bleeps, the peculiar medicinal smell that seems to be particular to haematology – all are now heavily ingrained in our consciousness. How I wish it were otherwise.
Steven was in a slightly better and more lively mood today - more talkative and slightly more energized. The NG tube is still in place and aspirating. There was yet another fuss about this, this morning, when they realised that it had been poorly inserted during the last procedure (only discovered after Steven had been sick to his stomach) and was not properly placed. This involved more rooting around until a correct placement within the stomach was achieved. One would think that for a patient in such a delicate condition they would really take care with such procedures – apparently not!
Today, Dr. Robin described Steven’s present medical status as extremely grave, which is pretty much in accordance with the medical opinion we were hearing all last week. (We try to get really regular updates as the situation is very dynamic and changes from hour to hour, literally.) She qualified this opinion by saying that things are also stable ‘at the moment’ – by this she means there has been no significant improvement or deterioration.
However, by late afternoon, long after Robin’s departure, Steven began to have difficulty breathing and has been on oxygen since then. The reason for this is retention of fluid in his lungs and throughout the rest of his body from all the intravenous hydration he receives. They are administering a diuretic to shift this fluid and ease up the extra pressure on the lungs. All very worrying.
Love to all,
Evelyn, Matthew and Steven
(Feargal returned to Manchester tonight!)
Another weekend bites the dust in Trèfle 3. We feel that we are practically living here at this point. The walls, floors, machine bleeps, the peculiar medicinal smell that seems to be particular to haematology – all are now heavily ingrained in our consciousness. How I wish it were otherwise.
Steven was in a slightly better and more lively mood today - more talkative and slightly more energized. The NG tube is still in place and aspirating. There was yet another fuss about this, this morning, when they realised that it had been poorly inserted during the last procedure (only discovered after Steven had been sick to his stomach) and was not properly placed. This involved more rooting around until a correct placement within the stomach was achieved. One would think that for a patient in such a delicate condition they would really take care with such procedures – apparently not!
Today, Dr. Robin described Steven’s present medical status as extremely grave, which is pretty much in accordance with the medical opinion we were hearing all last week. (We try to get really regular updates as the situation is very dynamic and changes from hour to hour, literally.) She qualified this opinion by saying that things are also stable ‘at the moment’ – by this she means there has been no significant improvement or deterioration.
However, by late afternoon, long after Robin’s departure, Steven began to have difficulty breathing and has been on oxygen since then. The reason for this is retention of fluid in his lungs and throughout the rest of his body from all the intravenous hydration he receives. They are administering a diuretic to shift this fluid and ease up the extra pressure on the lungs. All very worrying.
Love to all,
Evelyn, Matthew and Steven
(Feargal returned to Manchester tonight!)
Saturday, 17 November 2007
DAY 156
Dear everyone,
Our darling Steven passed away in our arms this afternoon at 3pm, surrounded by our deep, deep love and tenderness.
Evelyn, Matthew, Feargal and Aideen
PS: Once final arrangements have been organized, I will post the details on this website.
Our darling Steven passed away in our arms this afternoon at 3pm, surrounded by our deep, deep love and tenderness.
Evelyn, Matthew, Feargal and Aideen
PS: Once final arrangements have been organized, I will post the details on this website.
DAY 144
Dear everyone,
It’s difficult to take a positive view of things at the moment. Today was another truly awful experience – unbearable for us to witness but most of all impossible for Steven.
Last night, Steven fell over while getting out of bed (due to total weakness in his limbs) and ripped the NG tube from his nose. So, at 4am in the morning, Yannick and colleagues had to reinsert a new tube back into his stomach. By the time we arrived, very early, this morning, Steven was completely exhausted and traumatized from this happening. Naturally, it took him most of the morning to recover.
At the moment, there is considerable internal bleeding throughout his GI tract. This is as a result of the inflammation and raw soreness caused by the GVHD. They are transfusing platelets every 12 hours for coagulation. Meanwhile, Steven’s haemaglobin count is being hit hard and relentlessly as a result of direct blood loss.
The suffering is immense – I’m not going to dress this up for you and try to state it differently.
We do have a brilliant nurse, called Heléne, who has tremendous experience with GVHD in patients. She has a wonderful rationalizing effect and can see a way through this. Who knows? No matter how much one prepares information-wise, pre-transplant, nothing could ever lay adequate readiness for this reality.
We hope, we hope, we hope ……….
Evelyn, Matthew, Steven and Feargal
It’s difficult to take a positive view of things at the moment. Today was another truly awful experience – unbearable for us to witness but most of all impossible for Steven.
Last night, Steven fell over while getting out of bed (due to total weakness in his limbs) and ripped the NG tube from his nose. So, at 4am in the morning, Yannick and colleagues had to reinsert a new tube back into his stomach. By the time we arrived, very early, this morning, Steven was completely exhausted and traumatized from this happening. Naturally, it took him most of the morning to recover.
At the moment, there is considerable internal bleeding throughout his GI tract. This is as a result of the inflammation and raw soreness caused by the GVHD. They are transfusing platelets every 12 hours for coagulation. Meanwhile, Steven’s haemaglobin count is being hit hard and relentlessly as a result of direct blood loss.
The suffering is immense – I’m not going to dress this up for you and try to state it differently.
We do have a brilliant nurse, called Heléne, who has tremendous experience with GVHD in patients. She has a wonderful rationalizing effect and can see a way through this. Who knows? No matter how much one prepares information-wise, pre-transplant, nothing could ever lay adequate readiness for this reality.
We hope, we hope, we hope ……….
Evelyn, Matthew, Steven and Feargal
Friday, 16 November 2007
Day 143
Dear everyone,
Another very difficult day. Steven was feeling very poorly, tired and nauseous. The NG tube is still in place and all the difficulties continue as before. There is no end, it would seem to how much discomfort there can be and how little can be done about it. It is impossible to jolly Steven along as he is just not up to it. Feargal sat with Steven all afternoon but Steven drifted in and out of sleep most of this time and was really not capable of much interaction.
Marie Robin is on duty over the weekend. Matthew and I plan on talking to her tomorrow as we know her very well and she is certainly very experienced and proficient. We are constantly talking to everyone all of the time as things seem to change by the hour and there are always new questions to ask. Thank goodness, they are always so available and amenable!
That's about all I can say for tonight.
Love to all,
Evelyn, Matthew, Steven and Feargal
Another very difficult day. Steven was feeling very poorly, tired and nauseous. The NG tube is still in place and all the difficulties continue as before. There is no end, it would seem to how much discomfort there can be and how little can be done about it. It is impossible to jolly Steven along as he is just not up to it. Feargal sat with Steven all afternoon but Steven drifted in and out of sleep most of this time and was really not capable of much interaction.
Marie Robin is on duty over the weekend. Matthew and I plan on talking to her tomorrow as we know her very well and she is certainly very experienced and proficient. We are constantly talking to everyone all of the time as things seem to change by the hour and there are always new questions to ask. Thank goodness, they are always so available and amenable!
That's about all I can say for tonight.
Love to all,
Evelyn, Matthew, Steven and Feargal
Thursday, 15 November 2007
Day 142
Dear everyone,
Feargal arrived this evening, safely, and without too much delay as a result of the strike action, so, thank goodness for that! It did take several hours of Matthew's time as he had to drive to the airport and back in the dense traffic, but it was better than we had anticipated. I will keep things brief.
It's been another long day at the hospital. They decided to clamp the nasogastric (NG) tube this morning to see how things would go. Not very well. Once this mechanism was no longer available, Steven's stomach began to fill up and he recommenced the original difficulty of congestion and indigestion – not very comfortable as you can imagine. By late afternoon, the NG tube was once again reattached and the stomach aspiration resumed.
I don't know where this leaves us to be honest. We will have to wait and see how tomorrow goes and what the plan will be. Steven received platelets this evening, as without them the blood reappears very swiftly. He really needs them everyday now, while he has the NG tube.
We did a very small walk in the corridor today, but it proved to be very taxing. Again, Steven was really exhausted for most of the day.
Love to all,
Evelyn, Matthew, Steven and Feargal
Feargal arrived this evening, safely, and without too much delay as a result of the strike action, so, thank goodness for that! It did take several hours of Matthew's time as he had to drive to the airport and back in the dense traffic, but it was better than we had anticipated. I will keep things brief.
It's been another long day at the hospital. They decided to clamp the nasogastric (NG) tube this morning to see how things would go. Not very well. Once this mechanism was no longer available, Steven's stomach began to fill up and he recommenced the original difficulty of congestion and indigestion – not very comfortable as you can imagine. By late afternoon, the NG tube was once again reattached and the stomach aspiration resumed.
I don't know where this leaves us to be honest. We will have to wait and see how tomorrow goes and what the plan will be. Steven received platelets this evening, as without them the blood reappears very swiftly. He really needs them everyday now, while he has the NG tube.
We did a very small walk in the corridor today, but it proved to be very taxing. Again, Steven was really exhausted for most of the day.
Love to all,
Evelyn, Matthew, Steven and Feargal
Wednesday, 14 November 2007
DAY 141
Dear everyone,
The news today is fairly mixed.
Steven has not had any diarrhea since the middle of last night and this is a welcome development. According to Dr. de Latour, Steven’s stomach paralysis is a result of strong GVHD in the upper intestines which restricts the muscle spasm that moves material from the stomach into the intestines. The only sign that the GVHD in the intestines is improving would be a cessation of the diarrhea (sorry to be so graphic, but in this environment this discussion is just so normal!) which would then indicate that the stomach will return to normal - and empty accordingly.
Anna was in this afternoon, examined Steven, and felt that the tummy was better. There will be the usual roundtable meeting after lunch tomorrow where they will decide when to remove the nasal tube – tomorrow has been mentioned but we will ‘not count our chickens’ (another Stevenism of the moment) until we know for sure.
On the other hand, Steven has been exhausted all day and has slept for a great portion of it. He was not able to face the corridor today due to lack of energy, although he did do some leg and arm exercises, and sat in the chair, out of bed, for some time. The problem is that the more a body languishes, the more difficult it is to gain energy the following day. This difficulty emanates from the really radical muscle wasting processes of the steroids.
In summary, this continues to be a waiting game. The signs are newly positive but as we all now understand, things can change in a heartbeat, or something absolutely new can develop.
I always feel that even in the darkest abyss, it is the essence of human nature to grasp onto any shred of hope available and this is ultimately what sustains everyone through the deepest despair. As I sat in the waiting room the other day, waiting for Steven to go through his daily ablutions, I came across an Emily Dickinson poem amongst the literature (which had been translated into French, as of course it was a French publication) – it goes like this:
Hope
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
So, we continue to wait, and we hope with all our hearts and might that things will go better for Steven. We gain great sustenance in knowing that you are all praying and hoping for the same thing too.
Love to all,
Evelyn, Matthew and Steven
The news today is fairly mixed.
Steven has not had any diarrhea since the middle of last night and this is a welcome development. According to Dr. de Latour, Steven’s stomach paralysis is a result of strong GVHD in the upper intestines which restricts the muscle spasm that moves material from the stomach into the intestines. The only sign that the GVHD in the intestines is improving would be a cessation of the diarrhea (sorry to be so graphic, but in this environment this discussion is just so normal!) which would then indicate that the stomach will return to normal - and empty accordingly.
Anna was in this afternoon, examined Steven, and felt that the tummy was better. There will be the usual roundtable meeting after lunch tomorrow where they will decide when to remove the nasal tube – tomorrow has been mentioned but we will ‘not count our chickens’ (another Stevenism of the moment) until we know for sure.
On the other hand, Steven has been exhausted all day and has slept for a great portion of it. He was not able to face the corridor today due to lack of energy, although he did do some leg and arm exercises, and sat in the chair, out of bed, for some time. The problem is that the more a body languishes, the more difficult it is to gain energy the following day. This difficulty emanates from the really radical muscle wasting processes of the steroids.
In summary, this continues to be a waiting game. The signs are newly positive but as we all now understand, things can change in a heartbeat, or something absolutely new can develop.
I always feel that even in the darkest abyss, it is the essence of human nature to grasp onto any shred of hope available and this is ultimately what sustains everyone through the deepest despair. As I sat in the waiting room the other day, waiting for Steven to go through his daily ablutions, I came across an Emily Dickinson poem amongst the literature (which had been translated into French, as of course it was a French publication) – it goes like this:
Hope
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
So, we continue to wait, and we hope with all our hearts and might that things will go better for Steven. We gain great sustenance in knowing that you are all praying and hoping for the same thing too.
Love to all,
Evelyn, Matthew and Steven
Tuesday, 13 November 2007
DAY 140
Dear everyone,
Today has been has been a day of doctors’ visits. Anna and co. were in this morning to do the daily physical check up and record how things are going. This afternoon, we had Socié, de Latour and a gaggle of internes call by. Socié feels that there has been improvement but that the situation is still very serious. He pointed out that the stomach paralyisis that Steven is currently experiencing is well evidenced in post transplant GVHD in the Fanconi anaemia population. Steven’s bilruben levels have risen and he is also concerned that GVHD might be increasing in the liver – Steven has always had only a minimal trace of liver GVHD previously.
Matthew and I made an appointment with Dr. de Latour this evening, who is always so clear and informative. He feels that it will take another week until we can judge whether the present treatment is being truly effective. If there hasn’t been significant improvement by then, they will change the treatment and try another approach. He also signaled that Steven will need to remain in hospital for at least another month, until they are confident that his condition is under control. During the course of the conversation, he casually mentioned that Prof. Socié is an internationally recognized expert in the study and treatment of GVHD – so, I guess we’re in the right hands!
Steven was in okay form today. The prednisone steroid medication he is taking in an enormous dosage can take its toll on the mood and personality. Combine this with the increased amounts of morphine being consumed for the still very painful back problem, and now tummy cramps, and all the other varied strong medicaments, and you have a veritable cauldron of mind altering substances. While I wouldn’t say he is in bad form, he does seem to have lost the energy to interest himself in most of his usual diversions in this reduced hospital environment. He has abandoned the computer, playstation, and will only occasionally watch the news. That’s not to say he doesn’t put forward his best effort into getting better. He follows all recommendations thoroughly and always does a little exercise even if it is the last thing he feels like doing.
The other news is that strike action is all set to tie Paris up in knots again, from tomorrow. This time it is more widespread and will last for an indefinite period. Luckily we’re not dependent on public transport any more.
Love to all,
Evelyn, Matthew and Steven
Today has been has been a day of doctors’ visits. Anna and co. were in this morning to do the daily physical check up and record how things are going. This afternoon, we had Socié, de Latour and a gaggle of internes call by. Socié feels that there has been improvement but that the situation is still very serious. He pointed out that the stomach paralyisis that Steven is currently experiencing is well evidenced in post transplant GVHD in the Fanconi anaemia population. Steven’s bilruben levels have risen and he is also concerned that GVHD might be increasing in the liver – Steven has always had only a minimal trace of liver GVHD previously.
Matthew and I made an appointment with Dr. de Latour this evening, who is always so clear and informative. He feels that it will take another week until we can judge whether the present treatment is being truly effective. If there hasn’t been significant improvement by then, they will change the treatment and try another approach. He also signaled that Steven will need to remain in hospital for at least another month, until they are confident that his condition is under control. During the course of the conversation, he casually mentioned that Prof. Socié is an internationally recognized expert in the study and treatment of GVHD – so, I guess we’re in the right hands!
Steven was in okay form today. The prednisone steroid medication he is taking in an enormous dosage can take its toll on the mood and personality. Combine this with the increased amounts of morphine being consumed for the still very painful back problem, and now tummy cramps, and all the other varied strong medicaments, and you have a veritable cauldron of mind altering substances. While I wouldn’t say he is in bad form, he does seem to have lost the energy to interest himself in most of his usual diversions in this reduced hospital environment. He has abandoned the computer, playstation, and will only occasionally watch the news. That’s not to say he doesn’t put forward his best effort into getting better. He follows all recommendations thoroughly and always does a little exercise even if it is the last thing he feels like doing.
The other news is that strike action is all set to tie Paris up in knots again, from tomorrow. This time it is more widespread and will last for an indefinite period. Luckily we’re not dependent on public transport any more.
Love to all,
Evelyn, Matthew and Steven
Monday, 12 November 2007
DAY 139
Dear all,
Dr. de Latour did the rounds with Anna this morning. It seems like the handover between the two is still ongoing. He feels that things are going ‘okayish’ at the moment. He reiterated that they are sure it is GVHD but they are not wholly confident that the stomach bleeding is a result of this, or just some trauma caused by the nasogastric tube, or indeed a combination of the two. However, the tube needs to stay put until they are convinced the stomach is fully functioning.
It was also strongly recommended today that Steven needs to challenge himself in terms of physical activity. As a result, Matthew and Steven made a foray into the corridor, late morning. Steven did a full round of the corridor rolling a wheelchair in front of him to provide some balance. (You need to understand that one week ago Steven could not get out of bed by himself, or take his weight on his feet.) After the corridor tour, Steven was totally exhausted and needed a nap. This GVHD mercilessly knocks every ounce of vitality out of a body and is much worse than the direct aftermath of the transplant itself. Steven has said that he has never felt so ill at any time in the past. This afternoon, he also actually spent five minutes on the exercise bike. Again, this was a bit of a trial, but every little activity will help to build strength.
I will leave it at that for tonight.
Love to all,
Evelyn, Matthew and Steven
Dr. de Latour did the rounds with Anna this morning. It seems like the handover between the two is still ongoing. He feels that things are going ‘okayish’ at the moment. He reiterated that they are sure it is GVHD but they are not wholly confident that the stomach bleeding is a result of this, or just some trauma caused by the nasogastric tube, or indeed a combination of the two. However, the tube needs to stay put until they are convinced the stomach is fully functioning.
It was also strongly recommended today that Steven needs to challenge himself in terms of physical activity. As a result, Matthew and Steven made a foray into the corridor, late morning. Steven did a full round of the corridor rolling a wheelchair in front of him to provide some balance. (You need to understand that one week ago Steven could not get out of bed by himself, or take his weight on his feet.) After the corridor tour, Steven was totally exhausted and needed a nap. This GVHD mercilessly knocks every ounce of vitality out of a body and is much worse than the direct aftermath of the transplant itself. Steven has said that he has never felt so ill at any time in the past. This afternoon, he also actually spent five minutes on the exercise bike. Again, this was a bit of a trial, but every little activity will help to build strength.
I will leave it at that for tonight.
Love to all,
Evelyn, Matthew and Steven
Sunday, 11 November 2007
DAY 138
Dear everyone,
We arrived this morning just as Steven was waking up, around 10:30. He seemed a little groggy and it took him time to come around, but he had had a very good night’s sleep. Any morning is quite busy in the hospital as all of the room cleaning and doctors’ visits take place. By the time, Steven had done his daily wash, he was really much more alive and very much himself. He did a few exercises and was very talkative. We listened to some stories from nurse Daniel about his grandfather who was a hussar in the first world war and survived the four years with just a leg wound. I am always very touched by Armistice Day – millions of an innocent generation led by noble intentions into an absolute slaughterhouse.
There seems to be some improvement in Steven all round. Although there is intermittent fresh blood in the nasogastric tube, this is usually resolved by the administration of platelets and plasma. They currently need to maintain Steven’s platelet count above 50,000; whereas the average range for all of us with normal blood production is in the region of 150,000 to 400,000. You can immediately see the sort of deficit that Steven is dealing with when it comes to even average coagulation of a wound. Essentially, he now needs to be transfused nearly every day, or every second day, to keep this type of internal bleeding in check and provide a chance for healing to take place.
Dr. Ribaud saw Steven early this morning and while Matthew and I were present she popped her head around the door to say they feel Steven is more stable than yesterday or Friday.
I need to warn everyone about getting overly optimistic that this problem is fully resolved – it isn’t! There is some improvement but this challenge is far from being overcome. For the very first time, Steven is concerned about himself and requests that Matthew and myself watch over him, especially after he falls asleep. As if we would ever dream of doing otherwise!
So, tomorrow is the beginning of a new week. Hopefully, more progress will be made and the road to recovery will become clearer. Naturally, I will keep you all informed.
Love to all,
Evelyn, Matthew and Steven
We arrived this morning just as Steven was waking up, around 10:30. He seemed a little groggy and it took him time to come around, but he had had a very good night’s sleep. Any morning is quite busy in the hospital as all of the room cleaning and doctors’ visits take place. By the time, Steven had done his daily wash, he was really much more alive and very much himself. He did a few exercises and was very talkative. We listened to some stories from nurse Daniel about his grandfather who was a hussar in the first world war and survived the four years with just a leg wound. I am always very touched by Armistice Day – millions of an innocent generation led by noble intentions into an absolute slaughterhouse.
There seems to be some improvement in Steven all round. Although there is intermittent fresh blood in the nasogastric tube, this is usually resolved by the administration of platelets and plasma. They currently need to maintain Steven’s platelet count above 50,000; whereas the average range for all of us with normal blood production is in the region of 150,000 to 400,000. You can immediately see the sort of deficit that Steven is dealing with when it comes to even average coagulation of a wound. Essentially, he now needs to be transfused nearly every day, or every second day, to keep this type of internal bleeding in check and provide a chance for healing to take place.
Dr. Ribaud saw Steven early this morning and while Matthew and I were present she popped her head around the door to say they feel Steven is more stable than yesterday or Friday.
I need to warn everyone about getting overly optimistic that this problem is fully resolved – it isn’t! There is some improvement but this challenge is far from being overcome. For the very first time, Steven is concerned about himself and requests that Matthew and myself watch over him, especially after he falls asleep. As if we would ever dream of doing otherwise!
So, tomorrow is the beginning of a new week. Hopefully, more progress will be made and the road to recovery will become clearer. Naturally, I will keep you all informed.
Love to all,
Evelyn, Matthew and Steven
Saturday, 10 November 2007
DAY 137
Dear everyone,
Today has been marginally better. They managed to stop the bleeding late last night through a combination of platelets, plasma and an ulcer healing product called Inipomp. Steven claims he didn’t sleep during the night but I think he is unaware of how much he actually sleeps. It seemed to me that he slept quite heavily from about 8:30pm until we left which was around midnight.
We were here again very early this morning. Steven was wide awake and looking lively. He got up and about, washed himself and even did a few exercises, goaded on by his nurse Daniel (who is middle aged, about six foot two, with a large walrusesque moustache). Daniel is very much a man’s man and the only words to describe him would be ‘totally bonkers’. He looks like he could sling a patient over each shoulder and still nurse on successfully for Tréfle 3. His topics of conversation are many and wide-ranging but usually relate to ‘manly’ things. Anyway, the main point is that he really keeps Steven stimulated and motivated without overstretching him, which is very important at the moment.
Although Steven slept for a few hours this afternoon, most of the day he has been alert, talkative, and very pleased that he is allowed a little drinking water. He seems to be more stable on his feet and have a little more energy. There was no further bleeding during the day but plenty of stomach fluid came pouring out of the gastric tube on a continuous basis. This evening a little bleeding started up again but appeared to be resolved by another plasma transfusion, after which nothing emerged for over an hour. What we all need to see is no more blood or tummy fluid in the tube.
This morning Matthew and I met with Dr. Ribaud who is an associate professor and the duty doctor for the weekend. I can’t say either of us really warmed to her. She didn’t really inform us of anything we didn’t already know. In a nutshell, they feel that there is a blockage in the stomach caused by inflammation from the GVHD – this is why the stomach pump is essential. The high dosage steroids, in theory, should stop the assault of the graft cells on the GI lining which should then give the entire system a chance to heal. In the meantime, the no food and drink regime provides a rest period which should help things stabilize and get us over this critical period.
We are planning on having Feargal over for a long weekend from next Thursday. His visit will be followed by Ellen from the following Wednesday. So, Steven has much to look forward to. He is not happy that these visits will occur while he is still in hospital but realizes his staying here for the foreseeable future is unavoidable.
I know you are all hoping and praying that tomorrow will be a better day again for Steven and that this GVHD is brought under control. Steven lives his life amongst tubes at the moment – it would be bliss to get rid of the nasal monstrosity.
Love to all,
Evelyn, Matthew and Steven
Today has been marginally better. They managed to stop the bleeding late last night through a combination of platelets, plasma and an ulcer healing product called Inipomp. Steven claims he didn’t sleep during the night but I think he is unaware of how much he actually sleeps. It seemed to me that he slept quite heavily from about 8:30pm until we left which was around midnight.
We were here again very early this morning. Steven was wide awake and looking lively. He got up and about, washed himself and even did a few exercises, goaded on by his nurse Daniel (who is middle aged, about six foot two, with a large walrusesque moustache). Daniel is very much a man’s man and the only words to describe him would be ‘totally bonkers’. He looks like he could sling a patient over each shoulder and still nurse on successfully for Tréfle 3. His topics of conversation are many and wide-ranging but usually relate to ‘manly’ things. Anyway, the main point is that he really keeps Steven stimulated and motivated without overstretching him, which is very important at the moment.
Although Steven slept for a few hours this afternoon, most of the day he has been alert, talkative, and very pleased that he is allowed a little drinking water. He seems to be more stable on his feet and have a little more energy. There was no further bleeding during the day but plenty of stomach fluid came pouring out of the gastric tube on a continuous basis. This evening a little bleeding started up again but appeared to be resolved by another plasma transfusion, after which nothing emerged for over an hour. What we all need to see is no more blood or tummy fluid in the tube.
This morning Matthew and I met with Dr. Ribaud who is an associate professor and the duty doctor for the weekend. I can’t say either of us really warmed to her. She didn’t really inform us of anything we didn’t already know. In a nutshell, they feel that there is a blockage in the stomach caused by inflammation from the GVHD – this is why the stomach pump is essential. The high dosage steroids, in theory, should stop the assault of the graft cells on the GI lining which should then give the entire system a chance to heal. In the meantime, the no food and drink regime provides a rest period which should help things stabilize and get us over this critical period.
We are planning on having Feargal over for a long weekend from next Thursday. His visit will be followed by Ellen from the following Wednesday. So, Steven has much to look forward to. He is not happy that these visits will occur while he is still in hospital but realizes his staying here for the foreseeable future is unavoidable.
I know you are all hoping and praying that tomorrow will be a better day again for Steven and that this GVHD is brought under control. Steven lives his life amongst tubes at the moment – it would be bliss to get rid of the nasal monstrosity.
Love to all,
Evelyn, Matthew and Steven
Friday, 9 November 2007
DAY 136
Dear everyone,
Today has been the most difficult day of all. You will all understand if I keep things very brief.
I arrived at about 10:30 this morning and was very impressed by Steven’s lively and awake mood. The nasogastric tube was still in place but that was no surprise. At 12:50 exactly (I know the exact second because I was so shocked) I noticed that there was blood in the tube. Trying not to be too alarmed I called the nurse and eventually Anna (the new chef de clinique). Both assured me that this was fine and possibly a minor stomach trauma.
Well, the bleeding has continued all day. They are trying to tackle it with added platelets and plasma, which has blood clotting properties. Still the bleeding goes on. The medical team are now much more concerned and urgently want to see an end to this and any residual diarrhea.
It is now 10:43pm. Yannick is the night nurse, thank goodness, as he knows Steven very well. There is still blood in the tube.
Matthew and I will stay as long as possible this evening (all night if necessary) until we feel, or we are assured, that it’s alright to leave.
Needless to say, Steven needs everybody’s thoughts and prayers to get him through this very treacherous period.
Love to all,
Evelyn, Matthew and Steven
Today has been the most difficult day of all. You will all understand if I keep things very brief.
I arrived at about 10:30 this morning and was very impressed by Steven’s lively and awake mood. The nasogastric tube was still in place but that was no surprise. At 12:50 exactly (I know the exact second because I was so shocked) I noticed that there was blood in the tube. Trying not to be too alarmed I called the nurse and eventually Anna (the new chef de clinique). Both assured me that this was fine and possibly a minor stomach trauma.
Well, the bleeding has continued all day. They are trying to tackle it with added platelets and plasma, which has blood clotting properties. Still the bleeding goes on. The medical team are now much more concerned and urgently want to see an end to this and any residual diarrhea.
It is now 10:43pm. Yannick is the night nurse, thank goodness, as he knows Steven very well. There is still blood in the tube.
Matthew and I will stay as long as possible this evening (all night if necessary) until we feel, or we are assured, that it’s alright to leave.
Needless to say, Steven needs everybody’s thoughts and prayers to get him through this very treacherous period.
Love to all,
Evelyn, Matthew and Steven
Thursday, 8 November 2007
DAY 135
Dear everyone,
Not too much to report today as the developments have been few. The stomach siphoning continues with little respite from the discomfort. Drinking water remains banned. We have been informed that this system will remain in place for 24 hours after the tummy fluid stops flowing, which is anybody’s guess. Talk about GI blues!
Matthew and I spoke briefly with Socié this afternoon. He claims that despite the seemingly barbaric nature of this treatment, it is wholly necessary. (This is where my faith in the medical profession begins to dwindle and I have to remind myself that this is a consummate medical professional with oceans of experience in dealing with this particular problem.) There was a doctors’ meeting this afternoon and the outcome of this was a decision to ratchet up the steroid intake by another 50%. The belief is that this should help settle the GI system. The downside of this is that, as well as being anti-inflammatory, the steroids also act as an immunosuppressant which leaves the patient more susceptible to various infections. Now, where have we heard that before? I get the sinking feeling that we have come full circle and it’s a particularly vicious one.
Steven was in better form again today. Resignation once again appears to have gained the upper hand over a degree of anger and total frustration. He had a bad, wakeful and uncomfortable night and slept most of this afternoon. This evening, however, he declared he was in the mood for tv, so we watched the news on BBC World. It was a surprise to him to realize the date and the current affairs he’s missed since Monday.
We have a plethora of new faces on Tréfle 3. All four of the internes have moved on to newer pastures and have been replaced by new candidates who all look like fresh faced children to me – a true reflection of my increasing agedness! Even more of a surprise was hearing of Dr. de Latour’s imminent departure. He is staying in St. Louis, but is moving into the area of research. I am sure he will be sorely missed on Tréfle 3 where he was very popular with both patients and staff alike. He also enjoyed an excellent reputation throughout the rest of the hospital. His replacement is female, Greek, prefers to speak English, and likes to be called by her first name, Anna. She is more low key, personality-wise than de Latour, but seems very nice.
Until tomorrow.
Evelyn, Matthew and Steven
Not too much to report today as the developments have been few. The stomach siphoning continues with little respite from the discomfort. Drinking water remains banned. We have been informed that this system will remain in place for 24 hours after the tummy fluid stops flowing, which is anybody’s guess. Talk about GI blues!
Matthew and I spoke briefly with Socié this afternoon. He claims that despite the seemingly barbaric nature of this treatment, it is wholly necessary. (This is where my faith in the medical profession begins to dwindle and I have to remind myself that this is a consummate medical professional with oceans of experience in dealing with this particular problem.) There was a doctors’ meeting this afternoon and the outcome of this was a decision to ratchet up the steroid intake by another 50%. The belief is that this should help settle the GI system. The downside of this is that, as well as being anti-inflammatory, the steroids also act as an immunosuppressant which leaves the patient more susceptible to various infections. Now, where have we heard that before? I get the sinking feeling that we have come full circle and it’s a particularly vicious one.
Steven was in better form again today. Resignation once again appears to have gained the upper hand over a degree of anger and total frustration. He had a bad, wakeful and uncomfortable night and slept most of this afternoon. This evening, however, he declared he was in the mood for tv, so we watched the news on BBC World. It was a surprise to him to realize the date and the current affairs he’s missed since Monday.
We have a plethora of new faces on Tréfle 3. All four of the internes have moved on to newer pastures and have been replaced by new candidates who all look like fresh faced children to me – a true reflection of my increasing agedness! Even more of a surprise was hearing of Dr. de Latour’s imminent departure. He is staying in St. Louis, but is moving into the area of research. I am sure he will be sorely missed on Tréfle 3 where he was very popular with both patients and staff alike. He also enjoyed an excellent reputation throughout the rest of the hospital. His replacement is female, Greek, prefers to speak English, and likes to be called by her first name, Anna. She is more low key, personality-wise than de Latour, but seems very nice.
Until tomorrow.
Evelyn, Matthew and Steven
Wednesday, 7 November 2007
DAY 134
Dear everyone,
Today has been a ‘so-so’ kind of day.
The experience with the nasal intubation to remove tummy fluids continued until this afternoon when it was decided that the line had become blocked. The solution to this was removal of the existing tube and its rapid replacement with a new line. All of this takes some time, as you can imagine, and constitutes great wear and tear on Steven’s physical tolerance and energy level. None of these invasive procedures are really painful, just awfully unpleasant, particularly when Steven has to endure a whole variety of them in quick succession. He really detests this nasal line as it is quite uncomfortable and really restricts movement. The really bad news is that it may need to remain in place for another 24-48 hours – this knowledge alone has really soured any improvement in his mood. We’ll easily forgive him for any ill temper – personally, I think I would have started throwing things at people by about the fourth bronchoscopy! Honestly, if this system reduces his nausea and stomach discomfort, and gives his GI tract time to recover, then it will be of some considerable benefit.
Be aware that Steven has had nothing to eat since Sunday and he has not had a drink of water since Monday night. He cannot have water as there is a danger it could enter his lungs, so they prefer to remain really cautious. He receives all of his fluids intravenously and he is allowed an Evian aerosol of water to keep his mouth hydrated.
Medication-wise, the steroid intake has been almost trebled to control the GVHD. It is most unfortunate that this is necessary as they create so many negative side effects. One of these effects is induced wakefulness. As a result, Steven has been quite lucid today and has not been asleep quite as much. Steven thinks this is a major injustice as he would have preferred to sleep through this whole nasal intubation experience!
That’s about it for the moment.
Love to all,
Evelyn, Matthew and Steven
Today has been a ‘so-so’ kind of day.
The experience with the nasal intubation to remove tummy fluids continued until this afternoon when it was decided that the line had become blocked. The solution to this was removal of the existing tube and its rapid replacement with a new line. All of this takes some time, as you can imagine, and constitutes great wear and tear on Steven’s physical tolerance and energy level. None of these invasive procedures are really painful, just awfully unpleasant, particularly when Steven has to endure a whole variety of them in quick succession. He really detests this nasal line as it is quite uncomfortable and really restricts movement. The really bad news is that it may need to remain in place for another 24-48 hours – this knowledge alone has really soured any improvement in his mood. We’ll easily forgive him for any ill temper – personally, I think I would have started throwing things at people by about the fourth bronchoscopy! Honestly, if this system reduces his nausea and stomach discomfort, and gives his GI tract time to recover, then it will be of some considerable benefit.
Be aware that Steven has had nothing to eat since Sunday and he has not had a drink of water since Monday night. He cannot have water as there is a danger it could enter his lungs, so they prefer to remain really cautious. He receives all of his fluids intravenously and he is allowed an Evian aerosol of water to keep his mouth hydrated.
Medication-wise, the steroid intake has been almost trebled to control the GVHD. It is most unfortunate that this is necessary as they create so many negative side effects. One of these effects is induced wakefulness. As a result, Steven has been quite lucid today and has not been asleep quite as much. Steven thinks this is a major injustice as he would have preferred to sleep through this whole nasal intubation experience!
That’s about it for the moment.
Love to all,
Evelyn, Matthew and Steven
Tuesday, 6 November 2007
DAY 133
Dear everyone,
Every day brings some new developments and today has been no exception.
Matthew and I were here bright and early to accompany Steven to gastroenterology for his gastroscopy. We had already had a conversation with Socié who had arrived in Steven’s room just as we did. I can honestly say that he is really monitoring the current situation very closely and is frequently in and out of Steven’s room checking on things. He stated categorically that this is GVHD of the gastrointestinal (GI) tract and that the scope was merely a formality which would only corroborate this diagnosis and provide fodder for a further lab analysis. The treatment plan was already set to begin immediately. This consists of upping the steroid intake again (bit of a shame this has to happen) and adding a few new drugs to battle the GVHD. One of these is Etanercept, which is a relatively new drug being used for this purpose.
By 10:30, we began to make our way down for the GI fibreoscopy. Steven was feeling very poorly at this point as he had had a bad night, feeling completely dehydrated despite all the liquids being transfused. He had not been allowed any drinking water from midnight last night and had not been allowed to eat anything since Monday morning to give his stomach a rest – not that he had any desire whatsoever to eat! All of his nutrition is currently being delivered intravenously, as well as all his medications. Eventually he was taken in for the examination which didn’t take very long. When he was wheeled out they pointed out that the operation had not been entirely successful as Steven’s stomach was completely full. How could this be, you may ask when he had not eaten in almost 48 hours. Mystifying!
Back on Trèfle 3, the nurse was more than perplexed to hear this news. Socié eventually rushed in to explain that GVHD can sometimes cause a minor paralysis of the stomach which then ceases to empty properly. He immediately ordered that Steven’s tummy would need to be drained of its remaining contents. This is how we find ourselves this evening with a small nasal tube which has been inserted since this morning to drain away all the tummy fluids.
Despite the horrors of all these intrusive medical techniques, Steven is actually feeling better this evening and in much better form. The removal of tummy fluid has made a good difference. Its presence really seems to account for a lot of the difficulty he was having with swallowing and feeling congested. Hopefully, the new treatment regimen will begin to work soon and we can turn a corner in terms of mystery temperatures and unidentified flying viruses!
Love to all,
Evelyn, Matthew and Steven
Every day brings some new developments and today has been no exception.
Matthew and I were here bright and early to accompany Steven to gastroenterology for his gastroscopy. We had already had a conversation with Socié who had arrived in Steven’s room just as we did. I can honestly say that he is really monitoring the current situation very closely and is frequently in and out of Steven’s room checking on things. He stated categorically that this is GVHD of the gastrointestinal (GI) tract and that the scope was merely a formality which would only corroborate this diagnosis and provide fodder for a further lab analysis. The treatment plan was already set to begin immediately. This consists of upping the steroid intake again (bit of a shame this has to happen) and adding a few new drugs to battle the GVHD. One of these is Etanercept, which is a relatively new drug being used for this purpose.
By 10:30, we began to make our way down for the GI fibreoscopy. Steven was feeling very poorly at this point as he had had a bad night, feeling completely dehydrated despite all the liquids being transfused. He had not been allowed any drinking water from midnight last night and had not been allowed to eat anything since Monday morning to give his stomach a rest – not that he had any desire whatsoever to eat! All of his nutrition is currently being delivered intravenously, as well as all his medications. Eventually he was taken in for the examination which didn’t take very long. When he was wheeled out they pointed out that the operation had not been entirely successful as Steven’s stomach was completely full. How could this be, you may ask when he had not eaten in almost 48 hours. Mystifying!
Back on Trèfle 3, the nurse was more than perplexed to hear this news. Socié eventually rushed in to explain that GVHD can sometimes cause a minor paralysis of the stomach which then ceases to empty properly. He immediately ordered that Steven’s tummy would need to be drained of its remaining contents. This is how we find ourselves this evening with a small nasal tube which has been inserted since this morning to drain away all the tummy fluids.
Despite the horrors of all these intrusive medical techniques, Steven is actually feeling better this evening and in much better form. The removal of tummy fluid has made a good difference. Its presence really seems to account for a lot of the difficulty he was having with swallowing and feeling congested. Hopefully, the new treatment regimen will begin to work soon and we can turn a corner in terms of mystery temperatures and unidentified flying viruses!
Love to all,
Evelyn, Matthew and Steven
Monday, 5 November 2007
DAY 131
Dear everyone,
Steven is just feeling more and more out of sorts as the days go by and there is no real solution to his present illness. Apart from the regular conferences with various doctors and our almost constant presence here, Matthew and I can do nothing to relieve the situation for him. He is really not in talking form and even tv is proving too much for him. There is an air of total exhaustion about him and sleep is his only recourse away from the discomfort. Again, he has spent most of the day asleep.
De Latour was in this morning to share the newest and ever-evolving medical opinion. Apparently, they found no viruses in his lung and are now not concerned about the cloud which they initially felt was a bacterial infection. All results from the lab were negative. Where does that leave us?
Thoughts are now directed towards the oesophagus and gastrointestinal tract, mostly as a result of the diarrhea, the swallowing difficulty and the inability to eat. The feeling is that this may be the beginning of graft versus host disease (GVHD). As you may, or may not know, GVHD occurs when the new graft starts to identify cells in the body of the host as alien and begins an onslaught to destroy them. The most likely places to develop GVHD is the skin, the liver and the gastrointestinal system. They now suspect that Steven’s temperature vagaries may have been the result of low lying GVHD all along.
There is also the lingering herpes issue. Another explanation for the gastric discomfort would be the migration of herpes into the oesophagus but this would not account for the diarrhea.
It is also plausible that the current stomach condition may be just the result of some tummy virus. This has not been ruled out.
Their solution is to do yet another scope, this time of his gastrointestinal tract. So, tomorrow morning at 10:30 they will perform a gastroscopy to have a look around and see if they can spot any inflammation which would signal GVHD.
Love to all,
Evelyn, Matthew and Steven
Steven is just feeling more and more out of sorts as the days go by and there is no real solution to his present illness. Apart from the regular conferences with various doctors and our almost constant presence here, Matthew and I can do nothing to relieve the situation for him. He is really not in talking form and even tv is proving too much for him. There is an air of total exhaustion about him and sleep is his only recourse away from the discomfort. Again, he has spent most of the day asleep.
De Latour was in this morning to share the newest and ever-evolving medical opinion. Apparently, they found no viruses in his lung and are now not concerned about the cloud which they initially felt was a bacterial infection. All results from the lab were negative. Where does that leave us?
Thoughts are now directed towards the oesophagus and gastrointestinal tract, mostly as a result of the diarrhea, the swallowing difficulty and the inability to eat. The feeling is that this may be the beginning of graft versus host disease (GVHD). As you may, or may not know, GVHD occurs when the new graft starts to identify cells in the body of the host as alien and begins an onslaught to destroy them. The most likely places to develop GVHD is the skin, the liver and the gastrointestinal system. They now suspect that Steven’s temperature vagaries may have been the result of low lying GVHD all along.
There is also the lingering herpes issue. Another explanation for the gastric discomfort would be the migration of herpes into the oesophagus but this would not account for the diarrhea.
It is also plausible that the current stomach condition may be just the result of some tummy virus. This has not been ruled out.
Their solution is to do yet another scope, this time of his gastrointestinal tract. So, tomorrow morning at 10:30 they will perform a gastroscopy to have a look around and see if they can spot any inflammation which would signal GVHD.
Love to all,
Evelyn, Matthew and Steven
Sunday, 4 November 2007
DAY 130
Dear everyone,
Another difficult day for Steven. He really is doing his best but I think the long term struggle of feeling really weak and unwell, combined with this relatively sudden bout of total illness is really beginning to wear out his patience.
At least he has been off the oxygen for almost the entire day which surely hails some level of improvement in the lungs. The temperature now also appears to be stable. Again, he has been asleep for most of the afternoon, sitting up only for breakfast and a few snacks this evening for dinner. He cannot stomach a full meal of any kind and now severe diarrhea (but no cramping, thank goodness) has been added to the list of woes. Since Thursday, the main feature of physical discomfort has been related to a difficulty in swallowing and coughing – both actions causing a degree of pain and a feeling of congestion and indigestion.
The venerable Prof. Socié visited this morning – he has been on duty over the weekend which usually leaves him a little disgruntled. He reported the following: The results from the bronchoscopy are inconclusive and they cannot identify the viruses and or the bacteria in the lung - so far. A lack of lymphocytes (which are the building blocks of a healthy immune system) leaves Steven very susceptible to recurrent lung infections. This is likely to continue until lymphocytes are produced in greater numbers in his blood. Everyone is now very concerned about the herpes again. Steven’s current difficulty with swallowing and coughing is indicative that the herpes has moved from the mouth and throat into the oesophagus. The Foscavir medication has now been abandoned in favour of trying Zovirax again. You probably don’t recall, but Foscavir originally replaced Zovirax when the latter was found to be ineffective, during Steven’s first sojourn in pneumology.
I would like to see this herpes problem resolved once and for all because at the moment it is just making Steven’s life really miserable.
I’m sure we will have further news tomorrow as the working week swings into action and everyone returns after the weekend.
Love to all,
Evelyn, Matthew and Steven
Another difficult day for Steven. He really is doing his best but I think the long term struggle of feeling really weak and unwell, combined with this relatively sudden bout of total illness is really beginning to wear out his patience.
At least he has been off the oxygen for almost the entire day which surely hails some level of improvement in the lungs. The temperature now also appears to be stable. Again, he has been asleep for most of the afternoon, sitting up only for breakfast and a few snacks this evening for dinner. He cannot stomach a full meal of any kind and now severe diarrhea (but no cramping, thank goodness) has been added to the list of woes. Since Thursday, the main feature of physical discomfort has been related to a difficulty in swallowing and coughing – both actions causing a degree of pain and a feeling of congestion and indigestion.
The venerable Prof. Socié visited this morning – he has been on duty over the weekend which usually leaves him a little disgruntled. He reported the following: The results from the bronchoscopy are inconclusive and they cannot identify the viruses and or the bacteria in the lung - so far. A lack of lymphocytes (which are the building blocks of a healthy immune system) leaves Steven very susceptible to recurrent lung infections. This is likely to continue until lymphocytes are produced in greater numbers in his blood. Everyone is now very concerned about the herpes again. Steven’s current difficulty with swallowing and coughing is indicative that the herpes has moved from the mouth and throat into the oesophagus. The Foscavir medication has now been abandoned in favour of trying Zovirax again. You probably don’t recall, but Foscavir originally replaced Zovirax when the latter was found to be ineffective, during Steven’s first sojourn in pneumology.
I would like to see this herpes problem resolved once and for all because at the moment it is just making Steven’s life really miserable.
I’m sure we will have further news tomorrow as the working week swings into action and everyone returns after the weekend.
Love to all,
Evelyn, Matthew and Steven
Saturday, 3 November 2007
DAY 129
Dear everyone,
Saturday night on Trèfle 3 is not the most dynamic. It’s so quiet, you could hear a pin drop.
Today was marginally better for Steven, even though he still feels very ill and has a lot of physical discomfort. At least he has had more wakeful and lucid periods and he has managed to eat a little for breakfast and again this evening for dinner. The temperature has reduced into the high 37s.
Sociè is on duty this weekend and saw Steven this morning. Frankly, he couldn’t throw an awful lot of light on the situation as there are still no conclusive results from the fibreoscopy.
Medication-wise, the antibiotics are being given around the clock and he had two transfusions of gamma globulin (sounds like something that might make a body glow in the dark!) this afternoon. A diuretic was also administered as Steven’s weight reached an almighty 80 kilos today: they believe the two kilos gained since yesterday is fluid, since his food intake has been practically nil.
These are all the developments in the last 24 hours.
Love to all,
Evelyn, Matthew and Steven
Saturday night on Trèfle 3 is not the most dynamic. It’s so quiet, you could hear a pin drop.
Today was marginally better for Steven, even though he still feels very ill and has a lot of physical discomfort. At least he has had more wakeful and lucid periods and he has managed to eat a little for breakfast and again this evening for dinner. The temperature has reduced into the high 37s.
Sociè is on duty this weekend and saw Steven this morning. Frankly, he couldn’t throw an awful lot of light on the situation as there are still no conclusive results from the fibreoscopy.
Medication-wise, the antibiotics are being given around the clock and he had two transfusions of gamma globulin (sounds like something that might make a body glow in the dark!) this afternoon. A diuretic was also administered as Steven’s weight reached an almighty 80 kilos today: they believe the two kilos gained since yesterday is fluid, since his food intake has been practically nil.
These are all the developments in the last 24 hours.
Love to all,
Evelyn, Matthew and Steven
Friday, 2 November 2007
DAY 128
Dear everyone,
Today has been a very difficult day. Steven’s temperature is still capable of roaring towards 40° and he is feeling very poorly. He has no appetite, a cough and a pain in his chest. He has been asleep for the bulk of the day.
The fibreoscopy went ahead this morning, as planned, and what they saw more or less confirmed their suspicions of what they could see from the scan. The opinion is still favouring various viruses combined with either a bacterial or fungal infection. There is also some inflammation in the airways. They will not have official results from the lab until this evening, so it is unlikely we will hear anything conclusive until tomorrow.
Steven is currently receiving four different types of broad spectrum antibiotic and is on oxygen at the moment. They have also tried a gamma globulin transfusion – which is a blood plasma product containing antibodies which sometimes helps to counteract a virus. This had to be removed after Steven’s temperature continued to climb in response to it. There will be a change to more targeted antibiotics tomorrow, once the problem is specifically identified.
None of this is good news. I will try to let you know as soon as there is further information.
Evelyn, Matthew and Steven
Today has been a very difficult day. Steven’s temperature is still capable of roaring towards 40° and he is feeling very poorly. He has no appetite, a cough and a pain in his chest. He has been asleep for the bulk of the day.
The fibreoscopy went ahead this morning, as planned, and what they saw more or less confirmed their suspicions of what they could see from the scan. The opinion is still favouring various viruses combined with either a bacterial or fungal infection. There is also some inflammation in the airways. They will not have official results from the lab until this evening, so it is unlikely we will hear anything conclusive until tomorrow.
Steven is currently receiving four different types of broad spectrum antibiotic and is on oxygen at the moment. They have also tried a gamma globulin transfusion – which is a blood plasma product containing antibodies which sometimes helps to counteract a virus. This had to be removed after Steven’s temperature continued to climb in response to it. There will be a change to more targeted antibiotics tomorrow, once the problem is specifically identified.
None of this is good news. I will try to let you know as soon as there is further information.
Evelyn, Matthew and Steven
Thursday, 1 November 2007
DAY 127
Dear all,
I can hardly believe this blog is dated November 1st and I am still writing from the hospital. The date of the first blog was June which now seems a very, very long time ago.
Steven is not feeling very good at the moment and he states pretty consistently that he is feeling really unwell – very unlike him. This ‘unwellness’ mostly consists of feeling extremely exhausted and completely lethargic which results in a lot of sleeping throughout the day and night. Today his temperature has been in the high 38s and his appetite has diminished considerably.
Yesterday’s scan showed that he had two nodules and a larger lesion in his lung. Dr. de Latour explained this afternoon that they feel the nodules are areas of concentrated viral activity, which harbour many viruses (at least three!), as yet unidentified. The lesion they are not sure about – this could be bacterial, viral or fungal in nature. Yet another fibreoscopy has been arranged for tomorrow morning and Steven is already resigned to this as the sequence of events has just become all too predictable at this point. De Latour feels that Steven’s lungs have now become so vulnerable that they are inclined to pick up almost any infection or virus floating around. The further complication is that the main problem with viruses is that they are untreatable with antibiotics and can only be resolved by the body’s own immune defence system. We all know the difficulties this presents for a post transplant patient.
It is also suspected at this point that Steven has become resistant to the Foscavir, his anti-herpes medication – in other words, it’s not working very well. They are looking into this and will change the medication if their suspicions are confirmed.
More will be known tomorrow after the fibreoscopy.
Right now, Steven has just finished his dinner (all of it) and is tucking into yoghurt, a banana, and low fat, low sugar, chocolate mousse. He’s definitely looking brighter than earlier today.
Will let you know how things transpire tomorrow.
With love,
Evelyn, Matthew and Steven
I can hardly believe this blog is dated November 1st and I am still writing from the hospital. The date of the first blog was June which now seems a very, very long time ago.
Steven is not feeling very good at the moment and he states pretty consistently that he is feeling really unwell – very unlike him. This ‘unwellness’ mostly consists of feeling extremely exhausted and completely lethargic which results in a lot of sleeping throughout the day and night. Today his temperature has been in the high 38s and his appetite has diminished considerably.
Yesterday’s scan showed that he had two nodules and a larger lesion in his lung. Dr. de Latour explained this afternoon that they feel the nodules are areas of concentrated viral activity, which harbour many viruses (at least three!), as yet unidentified. The lesion they are not sure about – this could be bacterial, viral or fungal in nature. Yet another fibreoscopy has been arranged for tomorrow morning and Steven is already resigned to this as the sequence of events has just become all too predictable at this point. De Latour feels that Steven’s lungs have now become so vulnerable that they are inclined to pick up almost any infection or virus floating around. The further complication is that the main problem with viruses is that they are untreatable with antibiotics and can only be resolved by the body’s own immune defence system. We all know the difficulties this presents for a post transplant patient.
It is also suspected at this point that Steven has become resistant to the Foscavir, his anti-herpes medication – in other words, it’s not working very well. They are looking into this and will change the medication if their suspicions are confirmed.
More will be known tomorrow after the fibreoscopy.
Right now, Steven has just finished his dinner (all of it) and is tucking into yoghurt, a banana, and low fat, low sugar, chocolate mousse. He’s definitely looking brighter than earlier today.
Will let you know how things transpire tomorrow.
With love,
Evelyn, Matthew and Steven
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