A tired and grumpy little girl has arrived at home for a few days of peace and quiet. Back to hospital on Sunday evening for a full 5 days, Mon - Fri, of chemo. She's hoping to go to school tomorrow for a few hours and to see her friends in the weekend. She's now in the hot bath that she's been dreaming of all day, together with Natasha.
I've opened a bottle of Spanish Red.
Thursday, 26 November 2009
Almost there...
The asparaginase is almost in, 1ml (15 mins) to go now. The medical team have been super and kept the whole thing under close supervision. I got pretty nervous because they cleared everything away from both sides of her bed, "in case we need to get here quickly". Then they laid out all the antidote medicines and started by giving her a preventative dose. Then the asparaginase was started.
Kay has had some reactions. Within the first 5 mins she complained of a mild attack of the sweats, but this could have been attributed to nerves as much as anything else. After about 30 mins she started complaining of tummy cramps. This was painful enough for her to be in tears. So it was decided to give her some paracetamol and some sofrane to prevent sickness. 15 mins later I noticed that she was shivering and she told me that she was cold. So we had to tuck her under the covers and give her a warm gelpack. At this point the infusion was stopped for 15 mins to let things settle. Kay fell asleep for a while and the shivering stopped. The pump was started again and things then ran smoothly for a while. After about 2.5 hours Kay noticed that she had a rash on her hands. The nurse looked further and found that she had a rash on her thighs as well. The doctor was called, more antidote was given and infusion slowed by 50%.
As I write this we have reached the end of the infusion and the line has been flushed, so all the asparaginase is been given. Kay's back and arms are covered in a rash but it's slowly dying out. We have to wait until it's gone and the doctor is satisfied before we can be released. But that seems pretty likely now.
Kay has had some reactions. Within the first 5 mins she complained of a mild attack of the sweats, but this could have been attributed to nerves as much as anything else. After about 30 mins she started complaining of tummy cramps. This was painful enough for her to be in tears. So it was decided to give her some paracetamol and some sofrane to prevent sickness. 15 mins later I noticed that she was shivering and she told me that she was cold. So we had to tuck her under the covers and give her a warm gelpack. At this point the infusion was stopped for 15 mins to let things settle. Kay fell asleep for a while and the shivering stopped. The pump was started again and things then ran smoothly for a while. After about 2.5 hours Kay noticed that she had a rash on her hands. The nurse looked further and found that she had a rash on her thighs as well. The doctor was called, more antidote was given and infusion slowed by 50%.
As I write this we have reached the end of the infusion and the line has been flushed, so all the asparaginase is been given. Kay's back and arms are covered in a rash but it's slowly dying out. We have to wait until it's gone and the doctor is satisfied before we can be released. But that seems pretty likely now.
Score 2 to the non-specialists
If you type "asparaginase" into Google you end up with a bunch of sites that provide a range of interesting information about this drug. Marion & I did this on Tuesday evening, after Kay's allergic reaction. We discovered a number of interesting things: that allergic reactions to asparaginase are not rare, but merely uncommon; that normal procedure is to run an allergy test first before administering the drug; that a hospital in Rotterdam has run a trial with an varient of asparaginase that has led to a significant drop in the number of allergic reactions and that they have now adopted this alternative.
Yesterday Marion sat down with the specialist to discuss the subject. Marion tells me that he started out rather grumpy with her - I guess that we're on the road to be labelled "difficult parents" - but when she started questioning him why people who didn't seem to know that Kay had had an allergic reaction to the previous treatment were overseeing the treatment on Tuesday, he took her more seriously.
Marion asked him why the fact that Kay had had a reaction last time was not taken into account this time, especially when the previous supervising nurse had said that Kay would require close monitoring the next time that she got asparaginase. He said that this had been taken into account and that they never use a nurse to constantly monitor a patient. Marion asked why they had not run an allergy test first, to which the answer was that he had never heard of such a thing. Marion asked whether the Rotterdam varient was a solution in this case and was told that Rotterdam was still running a trial and that no conclusion had been reached.
Regarding further treatment, the specialist planned to use an alternative that is available within the ALR protocol. The disadvantage of this alternative is that it must be given 3x per week, which is a load of hassle. But that's what was being considered.
Later in the day Marion bumped into the specialist in the corridor. He remarked to her that as a result of Kay's reaction and Marion's remarks, they had decided in future to run an asparaginase allergy test before administering the full dose of the drug. So, score 2 to the non-specialists: no more itraconasole in this protocol and asparaginase will be preceeded by an allergy test.
Yesterday we heard of another change of plan: instead of the protocol alternative, Kay will today be given the same asparaginase treatment as she had on Tueday but this time they will first give her an antidote drug, then they will run in the asparaginase over 3 hours instead of 1, she will be put on a heart rate and O2 monitor and I WILL BE SITTING WATCHING OVER HER EVERY DAMNED MINUTE, with my finger very close to the yellow button.
The treatment will start shortly and will take about four hours. If all goes well we will be home later today. Watch this space...
Yesterday Marion sat down with the specialist to discuss the subject. Marion tells me that he started out rather grumpy with her - I guess that we're on the road to be labelled "difficult parents" - but when she started questioning him why people who didn't seem to know that Kay had had an allergic reaction to the previous treatment were overseeing the treatment on Tuesday, he took her more seriously.
Marion asked him why the fact that Kay had had a reaction last time was not taken into account this time, especially when the previous supervising nurse had said that Kay would require close monitoring the next time that she got asparaginase. He said that this had been taken into account and that they never use a nurse to constantly monitor a patient. Marion asked why they had not run an allergy test first, to which the answer was that he had never heard of such a thing. Marion asked whether the Rotterdam varient was a solution in this case and was told that Rotterdam was still running a trial and that no conclusion had been reached.
Regarding further treatment, the specialist planned to use an alternative that is available within the ALR protocol. The disadvantage of this alternative is that it must be given 3x per week, which is a load of hassle. But that's what was being considered.
Later in the day Marion bumped into the specialist in the corridor. He remarked to her that as a result of Kay's reaction and Marion's remarks, they had decided in future to run an asparaginase allergy test before administering the full dose of the drug. So, score 2 to the non-specialists: no more itraconasole in this protocol and asparaginase will be preceeded by an allergy test.
Yesterday we heard of another change of plan: instead of the protocol alternative, Kay will today be given the same asparaginase treatment as she had on Tueday but this time they will first give her an antidote drug, then they will run in the asparaginase over 3 hours instead of 1, she will be put on a heart rate and O2 monitor and I WILL BE SITTING WATCHING OVER HER EVERY DAMNED MINUTE, with my finger very close to the yellow button.
The treatment will start shortly and will take about four hours. If all goes well we will be home later today. Watch this space...
Good news
We heard yesterday that a visual inspection of Kay's blood has concluded that there are zero cancer cells visible. Of course this is not conclusive but it is a good sign. We are waiting to hear the results of the Minimum Residual Disease test that will be done on the bone marrow taken from Kay on Monday, and which is the all important deciding factor for the further course of her treatment. But it will be sometime next week before this result is known.
Tuesday, 24 November 2009
A sharp reminder
This evening Kay had a nasty allergic reaction to the chemo agent, Asparaginase. That asparaginase can cause an allergic reaction is known. Everytime that she has had this drug we have been warned beforehand that it can cause a reaction and we have been told to call the nurses if anything untoward begins to happen. The first time that she had asparaginase was in the first week of her treatment and she had no reaction to it. The second time was two weeks ago when she was transferred from Eindhoven to Nijmegen for out-patient chemo and then returned to Eindhoven. That time she had a light allergic reaction - she broke out in a rash shortly after the treatment. Those of you who get/read Marion's emails might remember the story. At the time Marion was told that the next time that Kay got asparaginase, she would be kept under strict observation.
That brings us to this evening, the 3rd asparaginase treatment. Again Kay & I were warned about possible allergic side effects. I was asked if she had had this drug before and I mentioned that this was the third time and that she'd had a light allergic reaction last time. Fine, I was told that it would take 60 mins to run the drug in. After about 15 mins Kay suddenly began to complain of stomach pain. I looked at her and saw that she had turned red and her face was swelling before my eyes. So I pressed the call button and knowing that this doesn't always lead to an instant response, I stepped out into the corridor to find a nurse. Fortunately our nurse was close by and came immediately. She immediately stopped the infusion and called the doctors to Kay, who was by this time throwing up violently and complaining about not being able to breathe properly. She thought that she was having another epileptic attack and I had to keep reassuring her that she was 'only' having an allergic reaction.
To be honest it was another bloody nasty experience. Antidotes to the asparaginase were given and Kay slowly recovered, although even now, many hours later, she still has a puffy face. She is complaining of stomach pain and has more or less slept the whole time since this escapade. I have been told that the next time smething happens that worries me I should press the emergency call button. This brings the roof down, as we experienced a few weeks ago and is why I didn't just hit it this time.
What worries me is that yet again there seems to have been a communication failure in the hospital system here. I had to repeat a number of times that this was Kay's 3rd asparaginase treatment and that she'd had a reaction the last time. When I exchanged notes with Marion, only then did I learn that Marion had been told that the next treatment would have to be closely supervised. So it seems that there's a communication problem between the out-patient clinic and the ward, ie ANOTHER communication problem. You could also argue that there was a communication breakdown on our side too. However, it hadn't yet occured to me that we have an official supervisory role in Kay's treatment. I'd been operating under the illusion (?) that someone in the hospital was supervising the case. Otherwise I'd be walking around with a copy of Kay's medical records and treatment plan.
But this thought isn't quite correct. I know that there is a very good specialist supervising Kay's treatment, but what if the 'system' isn't providing him with all the information available and what if, as a result, he isn't executing the necessary oversight in Kay's case? I think that we're going to have to discuss this subject again with him.
I'm told that an allergic reaction to asparaginase is a rare thing. This leads me to conclude that Kay is ticking all the "improbable" boxes: extremely unlikely that leukemia would return after 7 years, extremely unlikely that itraconasole toxicity would arise, very rare that an allergic reaction to asparaginase occurs. I really would like to see less of these improbable 'excursions' from the norm. Equally I would like the doctors here to exercise sharper oversight over a patient that has had a number of improbable reactions to the treatment.
Finally, this afternoon we had a child that was hopping from one foot to the other, wanting to take a walk round the hockey pitch. This evening the sick cancer patient has returned. A sharp reminder that we are not taking a walk in the park.
That brings us to this evening, the 3rd asparaginase treatment. Again Kay & I were warned about possible allergic side effects. I was asked if she had had this drug before and I mentioned that this was the third time and that she'd had a light allergic reaction last time. Fine, I was told that it would take 60 mins to run the drug in. After about 15 mins Kay suddenly began to complain of stomach pain. I looked at her and saw that she had turned red and her face was swelling before my eyes. So I pressed the call button and knowing that this doesn't always lead to an instant response, I stepped out into the corridor to find a nurse. Fortunately our nurse was close by and came immediately. She immediately stopped the infusion and called the doctors to Kay, who was by this time throwing up violently and complaining about not being able to breathe properly. She thought that she was having another epileptic attack and I had to keep reassuring her that she was 'only' having an allergic reaction.
To be honest it was another bloody nasty experience. Antidotes to the asparaginase were given and Kay slowly recovered, although even now, many hours later, she still has a puffy face. She is complaining of stomach pain and has more or less slept the whole time since this escapade. I have been told that the next time smething happens that worries me I should press the emergency call button. This brings the roof down, as we experienced a few weeks ago and is why I didn't just hit it this time.
What worries me is that yet again there seems to have been a communication failure in the hospital system here. I had to repeat a number of times that this was Kay's 3rd asparaginase treatment and that she'd had a reaction the last time. When I exchanged notes with Marion, only then did I learn that Marion had been told that the next treatment would have to be closely supervised. So it seems that there's a communication problem between the out-patient clinic and the ward, ie ANOTHER communication problem. You could also argue that there was a communication breakdown on our side too. However, it hadn't yet occured to me that we have an official supervisory role in Kay's treatment. I'd been operating under the illusion (?) that someone in the hospital was supervising the case. Otherwise I'd be walking around with a copy of Kay's medical records and treatment plan.
But this thought isn't quite correct. I know that there is a very good specialist supervising Kay's treatment, but what if the 'system' isn't providing him with all the information available and what if, as a result, he isn't executing the necessary oversight in Kay's case? I think that we're going to have to discuss this subject again with him.
I'm told that an allergic reaction to asparaginase is a rare thing. This leads me to conclude that Kay is ticking all the "improbable" boxes: extremely unlikely that leukemia would return after 7 years, extremely unlikely that itraconasole toxicity would arise, very rare that an allergic reaction to asparaginase occurs. I really would like to see less of these improbable 'excursions' from the norm. Equally I would like the doctors here to exercise sharper oversight over a patient that has had a number of improbable reactions to the treatment.
Finally, this afternoon we had a child that was hopping from one foot to the other, wanting to take a walk round the hockey pitch. This evening the sick cancer patient has returned. A sharp reminder that we are not taking a walk in the park.
Monday, 23 November 2009
Next chemo cycle begins
Last Friday Kay spent a few hours at school in the morning. She found it quite tiring but very rewarding. The only issue is that she finds it difficult when things get busy or too many people are around her and of course all the kids wanted to talk to her.
During the weekend she has been fairly active, friends to play on Saturday and yesterday she was in the village watching the 'Sint' parade. Yesterday evening Marion took her back to Nijmegen for the start of the week 6 chemo cycle.
Today she has had a bone marrow sample taken under anasthetic and she has begun this week's chemo. We expect that she will remain in Nijmegen until Thursday, but we don't know for sure. The bone marrow sample will be used to determine the future course of her treatment and as such is extremely important. If the sample contains less than 10% cancer cells, then she will continue on a chemo-only protocol. More than this and she will almost certainly require a bone marrow transplant. At least, this is what we have been given to understand. So, it's a very important week.
In herself Kay seems to be doing very well. But the effects of dexamethasone are starting becoming apparent. Her face is rounding out, she is hungry for fatty foods and her temper is quite short. The extra weight is no problem, frankly after the weight loss of the last few weeks it's welcome. But we have to start watching out for the temper problem, it's a characteristic of people on dexa and last time dealing with dexa-Kay was like defusing a bomb with a very short fuse. Still, there are worse things.
During the weekend she has been fairly active, friends to play on Saturday and yesterday she was in the village watching the 'Sint' parade. Yesterday evening Marion took her back to Nijmegen for the start of the week 6 chemo cycle.
Today she has had a bone marrow sample taken under anasthetic and she has begun this week's chemo. We expect that she will remain in Nijmegen until Thursday, but we don't know for sure. The bone marrow sample will be used to determine the future course of her treatment and as such is extremely important. If the sample contains less than 10% cancer cells, then she will continue on a chemo-only protocol. More than this and she will almost certainly require a bone marrow transplant. At least, this is what we have been given to understand. So, it's a very important week.
In herself Kay seems to be doing very well. But the effects of dexamethasone are starting becoming apparent. Her face is rounding out, she is hungry for fatty foods and her temper is quite short. The extra weight is no problem, frankly after the weight loss of the last few weeks it's welcome. But we have to start watching out for the temper problem, it's a characteristic of people on dexa and last time dealing with dexa-Kay was like defusing a bomb with a very short fuse. Still, there are worse things.
Thursday, 19 November 2009
At home, doing well
Kay came back home yesterday. She has only had a half dose of chemo this week and so is quite fit. But she's on dexa again and is a little grumpy, but not too bad. It turns out that next week she'll have a lot of chemo, so we'll enjoy the days until then.
Today Kay is an uncomfortable mixture of tired and bored, a feeling I know only too well. She wants to do something but she doesn't know what. I just took her for a walk round the garden and we ended up kicking a football around. We have a goal and Kay's likes shooting at it, so I was goalie. It was fun and she kept it up for 15 mins before her legs were too tired. She's now sat in front of the TV.
I have to say that she looks beautiful. Her cheeks are rosy and without hair she looks very elfin indeed. Medically she is doing very well, but of course we have to wait until next week to hear just how well she's doing. Looking at her now it is clear to me what trouble the itraconasol caused. Even though she's had vincristine this week, she has very little trouble with her tummy. She's even starting to eat reasonably, though still too little to sustain herself without the NG feeding.
A friend our ours who is a head pharmacist, Brit, checked out the subject of itraconasol toxicity and confirmed that Kay will make a full recovery from the effects. I gather that she will remain on an anti-epileptic drug for 6 months. Thanks, Brit!
So, things with Kay are quiet this week. Let's hope that they stay that way. No fevers!
Today Kay is an uncomfortable mixture of tired and bored, a feeling I know only too well. She wants to do something but she doesn't know what. I just took her for a walk round the garden and we ended up kicking a football around. We have a goal and Kay's likes shooting at it, so I was goalie. It was fun and she kept it up for 15 mins before her legs were too tired. She's now sat in front of the TV.
I have to say that she looks beautiful. Her cheeks are rosy and without hair she looks very elfin indeed. Medically she is doing very well, but of course we have to wait until next week to hear just how well she's doing. Looking at her now it is clear to me what trouble the itraconasol caused. Even though she's had vincristine this week, she has very little trouble with her tummy. She's even starting to eat reasonably, though still too little to sustain herself without the NG feeding.
A friend our ours who is a head pharmacist, Brit, checked out the subject of itraconasol toxicity and confirmed that Kay will make a full recovery from the effects. I gather that she will remain on an anti-epileptic drug for 6 months. Thanks, Brit!
So, things with Kay are quiet this week. Let's hope that they stay that way. No fevers!
Monday, 16 November 2009
Running behind?
Kay has not had the treatment that we'd expected, today. Last week we were told that she would have 3x chemos and a bone marrow today. In the event she's had a half load of vincristine chemo and I gather that what we were expecting will happen next week. However I'm not sure, Marion buggered off home in a bad mood without telling me what is going on, so frankly I haven't a clue. Wonderful.
Kay remains in good condition. She has eaten reasonably well, is active and cheerful. Given the light treatment today I suspect that we will be chucked out tomorrow.
Frankly I'm too tired and too pissed off with Marion to write anymore at the moment.
Kay remains in good condition. She has eaten reasonably well, is active and cheerful. Given the light treatment today I suspect that we will be chucked out tomorrow.
Frankly I'm too tired and too pissed off with Marion to write anymore at the moment.
Sunday, 15 November 2009
Amazing Kay
Well, the weekend could not have been more different from the previous week. Kay has been active and busy most of the weekend. Yesterday her teacher, Esther, came to visit and offered to help Kay with some school work or let her take a regular assessment test. Kay decided to take the test so Esther took her into the kitchen and Kay did the test. But then she wanted to know the result, so Esther took her to school so she could mark the paper. At school she helped Kay sort out some school work that Kay can continue to do herself in the coming days. I think that they were at school about 90 minutes. When they came back it turned out that Kay had scored an 'A' for the test. Wow!
Unsurprisingly she was very tired yesterday evening, so today we decided that she would have to be a little bit quieter. She had a short sleep around lunchtime and another one around 5pm. But even so she has been active all day. There has been no sign of the very sick child that we have had for the last few weeks. This evening Kay had to head back to the hospital, she's due for 3x chemos and a bone marrow tomorrow and we wanted her stable in hospital before such a heavy day. When we woke her up this evening she was very anxious about having to have a line put into her portal again - this is what triggered an epileptic attack last week. She was worried that the same thing would happen again. But we managed to convince her that the fact that she's been so active during the weekend is proof that the chance of having another attack is receeding.
Marion & Kay are now back in the hospital and settled for the night. Marion's PC has black screened during boot and I have no idea what the problem might be. So don't expect to get an email from her this evening.
I hope that what we have experienced this weekend is normality for a child having this treatment and that what has gone before has been abnormality. We'll see.
Unsurprisingly she was very tired yesterday evening, so today we decided that she would have to be a little bit quieter. She had a short sleep around lunchtime and another one around 5pm. But even so she has been active all day. There has been no sign of the very sick child that we have had for the last few weeks. This evening Kay had to head back to the hospital, she's due for 3x chemos and a bone marrow tomorrow and we wanted her stable in hospital before such a heavy day. When we woke her up this evening she was very anxious about having to have a line put into her portal again - this is what triggered an epileptic attack last week. She was worried that the same thing would happen again. But we managed to convince her that the fact that she's been so active during the weekend is proof that the chance of having another attack is receeding.
Marion & Kay are now back in the hospital and settled for the night. Marion's PC has black screened during boot and I have no idea what the problem might be. So don't expect to get an email from her this evening.
I hope that what we have experienced this weekend is normality for a child having this treatment and that what has gone before has been abnormality. We'll see.
Saturday, 14 November 2009
Thanks Again
Thanks again for everyone's kind comments. I often read them to Kay. It's difficult to respond to everyone, especially as I don't have everyone's email (Viviane!). But we do appreciate all the thoughts that head in our direction.
Rob.
Rob.
Friday, 13 November 2009
Weekend Pass
Kay has been allowed out of the hospital for the weekend. We have to report back on Sunday evening for the final week of induction therapy and the all important week 5 bone marrow sample.
Seeing Kay at home makes me realize just how sick and weak she was when she came home on Thursday last week. Right now Kay is playing on the floor of the lounge with Natasha and when I arrived home earlier both of them were hiding behind the sofa, waiting to surprise me. When Kay got home last time, she slumped on the sofa and barely moved all evening - I had to carry her to bed. The effects of the itranconasole toxicity were clearly visible I suppose, if only we had had the eyes to see it.
Marion & I are extremely tired and looking forward to a quiet weekend. Fingers crossed!
At home this evening.
Seeing Kay at home makes me realize just how sick and weak she was when she came home on Thursday last week. Right now Kay is playing on the floor of the lounge with Natasha and when I arrived home earlier both of them were hiding behind the sofa, waiting to surprise me. When Kay got home last time, she slumped on the sofa and barely moved all evening - I had to carry her to bed. The effects of the itranconasole toxicity were clearly visible I suppose, if only we had had the eyes to see it.
Marion & I are extremely tired and looking forward to a quiet weekend. Fingers crossed!
At home this evening.
Plundering Natasha's Sweety Bag
Wednesday, 11 November 2009
Hair Off
Kay's hair has been cut off today. She is not at all happy and it provoked another anxiety attack. She feels that without her hair she is not Kay anymore. Tomorrow I will be back with her, Marion has carried the brunt of this problem today. I'm sure that in the coming days we will have to give Kay even more support.
Mea Culpa
Kay was much better yesterday. Out of bed 5 times to walk the 2.5 metres to the toilet and back. She is now also more aware and knew that it was Tuesday. So much the better. No more attacks. One of the good things pointed out by the paper I read was that all children with itraconasol toxicity recovered between 4 days and 15 weeks after stopping the treatment. Today she was up to using the laptop provide by the hospital and is occasionally available on Skype or Messenger.
Yesterday evening 'our' pediatric onologist dropped by to discuss our problems with the treatment. I have to give him full points, he put both hands up and said mea culpa. He admitted that had more attention been given to our problems with Kay that the toxicity could have been discovered earlier. He said that the hospital had reviewed the protocol that Kay is getting and had decided to remove itraconasol from it because of the potential side effects with vincristine. So at least no other child will be exposed to the pain and suffering that Kay has had.
They will most likely skip the scheduled vincristine this week to avoid more toxicity problems. The specialist said that this was not a problem, it could be caught up with later. I gather that it is likely that Kay will stay in Nijmegen until Monday or Tuesday when the all-important week 5 bone marrow sample will be taken.
Our confidence in the medics and the wisdom of having Kay at home so early in the treatment has taken a rather large dent. It will take some work before Marion & I feel like carrying the responsibility for Kay at home, under the circumstances. Surely communications with Nijmegen will have to be improved.
A sad and disappointing story to say the very least.
Yesterday evening 'our' pediatric onologist dropped by to discuss our problems with the treatment. I have to give him full points, he put both hands up and said mea culpa. He admitted that had more attention been given to our problems with Kay that the toxicity could have been discovered earlier. He said that the hospital had reviewed the protocol that Kay is getting and had decided to remove itraconasol from it because of the potential side effects with vincristine. So at least no other child will be exposed to the pain and suffering that Kay has had.
They will most likely skip the scheduled vincristine this week to avoid more toxicity problems. The specialist said that this was not a problem, it could be caught up with later. I gather that it is likely that Kay will stay in Nijmegen until Monday or Tuesday when the all-important week 5 bone marrow sample will be taken.
Our confidence in the medics and the wisdom of having Kay at home so early in the treatment has taken a rather large dent. It will take some work before Marion & I feel like carrying the responsibility for Kay at home, under the circumstances. Surely communications with Nijmegen will have to be improved.
A sad and disappointing story to say the very least.
Tuesday, 10 November 2009
The Importance of Being On Top of Things (And the Power of the Internet)
I now have to relate a story that has got Marion & I pretty damned wound up with the specialists in Nijmegen. In short, we feel that they have not been paying adequate attention to Kay’s treatment and could have prevented the onset of these epileptic episodes.
A week last Friday, 30th Oct, we had a very bad night with Kay. She was screaming with tummy cramps all night. Now, it is true that vincristine, one of the primary chemo drugs, causes constipation and cramps. In the days previous to the 30th, Kay had been suffering tummy cramp which had been diagnosed as constipation. But this was a little strange since she hadn’t eaten anything for 5 days or so. Still, we followed instructions and dosed her with laxative until on Friday evening we were instructed to give a double dose of laxative. On Saturday she came down with a fever and was admitted to the Catherina and the subject of her tummy cramp became peripheral. However, the pain continued and we continued to find it disproportionate. We constantly raised the subject, peripherally, and we were constantly told that it was constipation. Half a dozen doctors examined her, could find no sign of anything in her intestinal tract but continued to pronounce constipation. They also said that there’s not much that can be done to relieve tummy cramps and prescribed paracetamol as the best medicine.
But our concerns grew. The pain that Kay was suffering was difficult for us to bare, never mind Kay. But of course, that’s what makes us a biased and unreliable party, theoretically unable and untrained to make professional judgement calls. Since her re-admission on Thursday we have been pushing the subject of her tummy cramp harder, since if that could be solved Kay would be able to sleep, we would be able to sleep and everyone would be far better off.
On Saturday the specialists in Nijmegen told us that Kay’s epileptic attacks were probably caused by vincristine toxicity resulting from the use of itraconasol. The itraconasol has been stopped and so Kay’s condition is starting to improve. But on Saturday night and all day Sunday she was in extreme pain from the cramps, unable to sleep for more than about 30 mins at a time and very upset and scared from the pain and the epileptic attacks. So yesterday Marion exercised parent power and demanded that something be done. And now she is being given a different pain killer that has reduced the effect of the cramps dramatically. Last night she slept for 4.5 hrs non-stop, the first time for more than 10 days.
Last night I decided to look into the subject of itraconasol toxicity and came across a very interesting paper from the Journal of Paediatric Oncology, see: http://journals.lww.com/jpho-online/Abstract/2005/07000/Itraconazole_Related_Increased_Vincristine.10.aspx for the abstract, if anyone is interested. Now on reading this article I discovered that the primary symptoms of this toxicity include: the normal vincristine abdominal cramps and constipation, but then greatly magnified by toxicity induced by the itraconasol. In other words Kay has been suffering the preliminary effects of itraconasol toxicity for probably 10 days, meaning that if someone had taken Marion & I seriously and looked into the cramps earlier the toxicity build-up leading to the brain damage and epilepsy could have been avoided. This could have been determined by a relatively simple test to look at vincristine toxicity in her blood.
I have to say that we are pretty unhappy by this lapse on behalf of the specialists. There’s more to the situation than I have written here and of course, as I expect the doctors to use as an excuse, we’re not dealing with exact science. But on other hand we’re supposed to be in the hands of the top professionals and they should be able to think of things like itraconasol toxicity.
I have put my concerns to the duty doctor today, rather pointedly. I have been told that the top man, The Professor, will drop by later today, I assume to correct my layman’s understanding of the situation. I suppose that parents who go around downloading papers from medical journal websites must a bane in the life of the professional medic. I said so much to the duty doctor, who replied: “But you have to pay for those papers, don’t you?”. To which my response was, “What’s $40,- compared to understanding in detail what is going on with my daughter?”.
I sometimes wonder about people...
A week last Friday, 30th Oct, we had a very bad night with Kay. She was screaming with tummy cramps all night. Now, it is true that vincristine, one of the primary chemo drugs, causes constipation and cramps. In the days previous to the 30th, Kay had been suffering tummy cramp which had been diagnosed as constipation. But this was a little strange since she hadn’t eaten anything for 5 days or so. Still, we followed instructions and dosed her with laxative until on Friday evening we were instructed to give a double dose of laxative. On Saturday she came down with a fever and was admitted to the Catherina and the subject of her tummy cramp became peripheral. However, the pain continued and we continued to find it disproportionate. We constantly raised the subject, peripherally, and we were constantly told that it was constipation. Half a dozen doctors examined her, could find no sign of anything in her intestinal tract but continued to pronounce constipation. They also said that there’s not much that can be done to relieve tummy cramps and prescribed paracetamol as the best medicine.
But our concerns grew. The pain that Kay was suffering was difficult for us to bare, never mind Kay. But of course, that’s what makes us a biased and unreliable party, theoretically unable and untrained to make professional judgement calls. Since her re-admission on Thursday we have been pushing the subject of her tummy cramp harder, since if that could be solved Kay would be able to sleep, we would be able to sleep and everyone would be far better off.
On Saturday the specialists in Nijmegen told us that Kay’s epileptic attacks were probably caused by vincristine toxicity resulting from the use of itraconasol. The itraconasol has been stopped and so Kay’s condition is starting to improve. But on Saturday night and all day Sunday she was in extreme pain from the cramps, unable to sleep for more than about 30 mins at a time and very upset and scared from the pain and the epileptic attacks. So yesterday Marion exercised parent power and demanded that something be done. And now she is being given a different pain killer that has reduced the effect of the cramps dramatically. Last night she slept for 4.5 hrs non-stop, the first time for more than 10 days.
Last night I decided to look into the subject of itraconasol toxicity and came across a very interesting paper from the Journal of Paediatric Oncology, see: http://journals.lww.com/jpho-online/Abstract/2005/07000/Itraconazole_Related_Increased_Vincristine.10.aspx for the abstract, if anyone is interested. Now on reading this article I discovered that the primary symptoms of this toxicity include: the normal vincristine abdominal cramps and constipation, but then greatly magnified by toxicity induced by the itraconasol. In other words Kay has been suffering the preliminary effects of itraconasol toxicity for probably 10 days, meaning that if someone had taken Marion & I seriously and looked into the cramps earlier the toxicity build-up leading to the brain damage and epilepsy could have been avoided. This could have been determined by a relatively simple test to look at vincristine toxicity in her blood.
I have to say that we are pretty unhappy by this lapse on behalf of the specialists. There’s more to the situation than I have written here and of course, as I expect the doctors to use as an excuse, we’re not dealing with exact science. But on other hand we’re supposed to be in the hands of the top professionals and they should be able to think of things like itraconasol toxicity.
I have put my concerns to the duty doctor today, rather pointedly. I have been told that the top man, The Professor, will drop by later today, I assume to correct my layman’s understanding of the situation. I suppose that parents who go around downloading papers from medical journal websites must a bane in the life of the professional medic. I said so much to the duty doctor, who replied: “But you have to pay for those papers, don’t you?”. To which my response was, “What’s $40,- compared to understanding in detail what is going on with my daughter?”.
I sometimes wonder about people...
Pain and Understanding
On Sunday Kay was cycling between sleep and anxiety attacks in about 60-90 minute intervals. During the day I began to question her about the cause of her anxiety. Yes, she was afraid that she was dying. Yes, she was afraid of the attacks. Yes, she was afraid of the terrible tummy cramps that she was getting. And slowly it occurred to me that Kay has an adult's perception of her circumstances but a child's ability to understand them. No-one had bothered to explain to her that she wasn't going to die from tummy cramps. Nor had we adequately explained that although she was getting epileptic attacks, they too were not going to kill her - even though she might feel like it - and that they didn't mean that she was on the road to death.
Kay has been at least partially conscious during these attacks. She could hear Marion screaming at the start of Saturday's and she felt like she couldn't breath. I haven't yet mentioned it, but she had another attack on Sunday, which was fortunately a quieter and more dignified affair. Nobody panicked, we just sat and talked her through it and held her hand. Again she was aware that the attack was starting and she was mostly aware during the attack. Again she felt that she couldn't breath.
The poor child was really terrified and the terror itself was pushing her towards another attack. So during the day I spoke to her about the pain and the attacks and reassured her that they didn't mean that she was going to die. However, I'm just Daddy and Daddy would say that now, wouldn't he? So I asked Esther, our duty nurse at the time, to talk to Kay. Esther has a lot of experience dealing with epileptic children and she did a brilliant job of telling Kay the whole truth without deflecting or dodging the tricky issues. After this Kay was a bit more relaxed.
Yesterday Marion exercised parent power and demanded that Kay be allowed to talk to a child psychologist. This was arranged and again, Kay is better for it. However, today I notice that as she recovers from the last few days her recollection of events is fortunately fading (I wish my recollection would fade). So I guess that we will need to repeat these assurances constantly during the next few days.
No attacks since Sunday evening. We had a relatively quiet night last night, relatively being an important component of this statement. This morning Kay is looking better. She has walked 3 metres to the toilet, which is the first time she's walked since Thursday. She's now sleeping, my gorgeous girl.
Kay has been at least partially conscious during these attacks. She could hear Marion screaming at the start of Saturday's and she felt like she couldn't breath. I haven't yet mentioned it, but she had another attack on Sunday, which was fortunately a quieter and more dignified affair. Nobody panicked, we just sat and talked her through it and held her hand. Again she was aware that the attack was starting and she was mostly aware during the attack. Again she felt that she couldn't breath.
The poor child was really terrified and the terror itself was pushing her towards another attack. So during the day I spoke to her about the pain and the attacks and reassured her that they didn't mean that she was going to die. However, I'm just Daddy and Daddy would say that now, wouldn't he? So I asked Esther, our duty nurse at the time, to talk to Kay. Esther has a lot of experience dealing with epileptic children and she did a brilliant job of telling Kay the whole truth without deflecting or dodging the tricky issues. After this Kay was a bit more relaxed.
Yesterday Marion exercised parent power and demanded that Kay be allowed to talk to a child psychologist. This was arranged and again, Kay is better for it. However, today I notice that as she recovers from the last few days her recollection of events is fortunately fading (I wish my recollection would fade). So I guess that we will need to repeat these assurances constantly during the next few days.
No attacks since Sunday evening. We had a relatively quiet night last night, relatively being an important component of this statement. This morning Kay is looking better. She has walked 3 metres to the toilet, which is the first time she's walked since Thursday. She's now sleeping, my gorgeous girl.
Sunday, 8 November 2009
Flavours of Terror
We arrived in Nijmegen yesterday without event. Kay was reasonably sharp, her eye movement was normal, at least from the amateur medic's point of view. The nurses and doctors began to do their thing. Two specialists were due to take a look at Kay, an oncologist and a neurologist. The MRI scan data had travelled with us and the specialists needed time to study the case. But as we waited Kay’s condition started to degrade, specifically her eye movement became restricted and she became a little dopey and slow in her responses.
We had made an issue of her tummy pain when we arrived, so the duty paediatrician checked her out and concluded that the pain is “just” cramp caused by the fact that Kay’s eating so little. That she’s most comfortable curled up in a foetal position is also seen as confirmation of cramp. There’s not much that can be done to reduce this pain, apparently.
The nurses needed to connect up Kay’s portal for the various IV’s that she needs. Kay had previously agreed a protocol with the nurses for this, requiring that the nurses firstly run through the procedure with Kay, then tell them what they are doing step by step, then counting down from 3 as they are about to stick the needle into the portal. When the nurse told Kay that they needed to connect the line, she became very tense. She started saying that this was all too much and that she just couldn’t go on any more. Marion & I tried to calm her and the nurse started to explain what was going to happen next. They cleaned her skin around the portal and prepared to place the needle. Marion stood on Kay’s left next to her shoulder with the nurse next to her. I stood at the left end of the bed. The nurse started to count down, 3... 2... 1... ...as she called 1 Kay went into an epileptic convulsion. Her back arched, her eyes rolled back, limbs flailing. Marion went nuts, hysterical, and ran round the bed and into the corridor to call for help. The nurses starting doing whatever they do under the circumstances and I stepped to Kay’s side, put my hand behind her neck and grabbed her left hand and started talking to her while keeping an eye on her monitor. Someone pushed the emergency button and soon the room was swimming with people, including the two specialists.
I have no idea how long the attacked lasted, seemed like minutes, but I suppose it was only a minute or so. As I talked to her, the convulsion passed and Kay started to respond to my voice. Marion calmed down and stepped in on the other side of the bed and held Kay’s other hand. She started to respond and them to talk a little, but she couldn’t see anything. So I started telling her that I was holding her face and Mama was holding her hand and that the doctors & nurses were there. After a few minutes her vision started to return and the moment passed.
It is clear that Kay is very stressed by her circumstances. This attack was definitely triggered by stress and since we have seen her have anxiety attacks that, if not halted, were heading towards another epileptic episode. Shortly after we had a quick initial conversation with the oncologist. She told us that there were various possible causes for Kay’s attacks and that they were now going to settled down and review the MRI and other data, including the latest blood tests. They would get back to us later in the evening. An hour or so later we sat with both specialists and the nurse in charge of us to hear their conclusions. They said that the problem was not a bacterial or virus infection, no blood clots or bleeds and no other indications of the cause of the damage to Kay’s brain other than toxicity from either the chemo or the supporting medicine. The pattern of the attacks did not fit Methatrexate toxicity and they thought that it was likely to be a combination of one of the chemo agents together with Intraconasol, which is given to prevent fungus infections. So the plan was to stop the Intraconasol and see what happens during the coming days. They could not predict the outcome, the attacks could stop within a few days or weeks or not at all.
Marion spent last night with Kay, a night in which nether of them slept very much. I went to the wonderful Ronald McDonald house, drank a glass of wine or so, swallowed 2 mellatonin tables and more or less passed out into some kind of sleep unconsciousness. I emerged around 9am this morning and returned to find that Kay has improved over yesterday. No more attacks and she looks a little better as well. She is moving around more and her eyes are behaving normally. The neurologist looked in on her this afternoon and he is please with her progress. So we have to continuing hoping that the damage is reversible and that she’ll make a full recovery from this nasty side effect. The chemo will continue largely as the protocol dictates.
We had made an issue of her tummy pain when we arrived, so the duty paediatrician checked her out and concluded that the pain is “just” cramp caused by the fact that Kay’s eating so little. That she’s most comfortable curled up in a foetal position is also seen as confirmation of cramp. There’s not much that can be done to reduce this pain, apparently.
The nurses needed to connect up Kay’s portal for the various IV’s that she needs. Kay had previously agreed a protocol with the nurses for this, requiring that the nurses firstly run through the procedure with Kay, then tell them what they are doing step by step, then counting down from 3 as they are about to stick the needle into the portal. When the nurse told Kay that they needed to connect the line, she became very tense. She started saying that this was all too much and that she just couldn’t go on any more. Marion & I tried to calm her and the nurse started to explain what was going to happen next. They cleaned her skin around the portal and prepared to place the needle. Marion stood on Kay’s left next to her shoulder with the nurse next to her. I stood at the left end of the bed. The nurse started to count down, 3... 2... 1... ...as she called 1 Kay went into an epileptic convulsion. Her back arched, her eyes rolled back, limbs flailing. Marion went nuts, hysterical, and ran round the bed and into the corridor to call for help. The nurses starting doing whatever they do under the circumstances and I stepped to Kay’s side, put my hand behind her neck and grabbed her left hand and started talking to her while keeping an eye on her monitor. Someone pushed the emergency button and soon the room was swimming with people, including the two specialists.
I have no idea how long the attacked lasted, seemed like minutes, but I suppose it was only a minute or so. As I talked to her, the convulsion passed and Kay started to respond to my voice. Marion calmed down and stepped in on the other side of the bed and held Kay’s other hand. She started to respond and them to talk a little, but she couldn’t see anything. So I started telling her that I was holding her face and Mama was holding her hand and that the doctors & nurses were there. After a few minutes her vision started to return and the moment passed.
It is clear that Kay is very stressed by her circumstances. This attack was definitely triggered by stress and since we have seen her have anxiety attacks that, if not halted, were heading towards another epileptic episode. Shortly after we had a quick initial conversation with the oncologist. She told us that there were various possible causes for Kay’s attacks and that they were now going to settled down and review the MRI and other data, including the latest blood tests. They would get back to us later in the evening. An hour or so later we sat with both specialists and the nurse in charge of us to hear their conclusions. They said that the problem was not a bacterial or virus infection, no blood clots or bleeds and no other indications of the cause of the damage to Kay’s brain other than toxicity from either the chemo or the supporting medicine. The pattern of the attacks did not fit Methatrexate toxicity and they thought that it was likely to be a combination of one of the chemo agents together with Intraconasol, which is given to prevent fungus infections. So the plan was to stop the Intraconasol and see what happens during the coming days. They could not predict the outcome, the attacks could stop within a few days or weeks or not at all.
Marion spent last night with Kay, a night in which nether of them slept very much. I went to the wonderful Ronald McDonald house, drank a glass of wine or so, swallowed 2 mellatonin tables and more or less passed out into some kind of sleep unconsciousness. I emerged around 9am this morning and returned to find that Kay has improved over yesterday. No more attacks and she looks a little better as well. She is moving around more and her eyes are behaving normally. The neurologist looked in on her this afternoon and he is please with her progress. So we have to continuing hoping that the damage is reversible and that she’ll make a full recovery from this nasty side effect. The chemo will continue largely as the protocol dictates.
Saturday, 7 November 2009
Nijmegen here we come... (again)
Last night's events are enough of a concern for us to be moved to Nijmegen this afternoon.
Another nightmarish night
The MRI scan that was performed on Kay yesterday showed that she has no tumour, bleeds or blocked blood vessels in her brain. However her brain tissue has been damaged by the Methatrexate chemo. The damage should heal with time but in the meantime she has to be treated with anti-epileptic drugs. And more Methatrexate is due shortly...
Kay had not had any food for nearly 48 hours so last night we planned to put a litre of feed into her. Around 9.30 I noticed that although she said that she was watching TV, her eyes weren't pointed in the right direction. I held my hand in front of her and asked how many fingers I was holding up and she gave the right answer. So I stepped over it for the time being, after all I'm neither doctor nor nurse. But then around 10pm she started complaining about tummy pain. At the same time her O2 saturation dropped to around 80% and her eyes seemed to be fixed looking to the left. I was about to ring the bell when she started throwing up - everything that we had put in came out.
So the nurse & I started cleaning her up and I started pointing out to the nurse Kay's state. The nurse also noticed that Kay was making strange chewing movements with her mouth. Then her O2 sats dropped again to 80%. The nurse them called in the problem and the paediatrian appeared fairly rapidly. She put Kay on oxygen and concluded that she was slipping into a coma again and sure enough, Kay started to fade away. She was about (say) 30% conscious, she could respond to questions but her answers made no sense and she became slowly less responsive. She could not move her eyes to the right beyond the centre position. The doctor administered domicum (?) a drug relaxant that helps with seisures. Kay's symptoms started to slowly receed but equally she became very sleepy.
After a while - don't know how long, probably an hour or two - the effects of the drug started wear off. As Kay slowly woke up it seemed that her symptoms merely returned. When she was 'awake', ie responding to questions, her eyes were pointed left and she was still chewing. When she fell asleep the chewing stopped and she appeared more relaxed. However, through all of this she was increasingly complaining about pain/cramp in her tummy, until every now and then she was literally screaming from the pain. Also, the nurses were checking her blood pressure and pupil reaction every hour. Thus it was extremely difficult to get her to sleep and keep her there.
The doctors decided to bring forward the next dose of the anti-epileptic drug. This was administrated around 2am, I think. From that moment onwards her condition slowly improved during the rest of the night. But the tummy pain - a separate and unrelated issue - continued. I was cuddling her constantly and rubbing her tummy. She was given paracetamol, to no great effect. At some point I suggested that we use my trick to relax her and put on some music. Kay liked that idea and it worked very well. The music gave her something to focus on and relaxed her and I had an easier time getting her to sleep and keeping her there. So my thanks goes out to Nora Jones (who I saw on Jools Holland last night), Eva Cassidy, Madeline Peyroux and Katy Melua for giving Kay something of a restful second half of the night. She's lying here now listening to Coldplay. (Frank, I know that you hate Nora Jones but she does deserve some credit here...)
At around 4.30am I managed to close my eyes for the first time and during the next few hours managed to grab some sleep in bursts of about 30 mins. This morning Kay's eyes are working normally and the other symptoms have disappeared for now. But she's very disconnected with the world, which I understand is an initial effect of the anti-epilepsy drug. Also she's extremely weak, cannot sit up in bed and is feeling dizzy. Her total state is very worrying, even though the doctors tell us that she's doing well under the circumstances. But I suspect that they would always say that, wouldn't they? My thinking is that A) the MRI scan showed nothing but the Methatrexate damage and B) that if things were bad we'd be in Njimegen by now.
Today I intend to push the subject of her tummy pain harder with the Doctors. If we can get that sorted out things will become a lot easier because Kay will be able to sleep longer and more easily.
I didn't dare ring Marion during any of this - she would have been back here in a flash (she was at home last night). She really needed a night's sleep and Kay's situation was not threatening, at least on the scale on which we're now operating. I told her about it this morning and she immediately veered towards panic, justifying my decision to leave her be. At least one of us needs to have had a night's rest at any given time. And I don't think having a panic'd, sleep deprived Mama driving through the centre of Eindhoven in the early hours of Saturday morning would have been safe for anyone.
What a bloody nightmare.
Kay had not had any food for nearly 48 hours so last night we planned to put a litre of feed into her. Around 9.30 I noticed that although she said that she was watching TV, her eyes weren't pointed in the right direction. I held my hand in front of her and asked how many fingers I was holding up and she gave the right answer. So I stepped over it for the time being, after all I'm neither doctor nor nurse. But then around 10pm she started complaining about tummy pain. At the same time her O2 saturation dropped to around 80% and her eyes seemed to be fixed looking to the left. I was about to ring the bell when she started throwing up - everything that we had put in came out.
So the nurse & I started cleaning her up and I started pointing out to the nurse Kay's state. The nurse also noticed that Kay was making strange chewing movements with her mouth. Then her O2 sats dropped again to 80%. The nurse them called in the problem and the paediatrian appeared fairly rapidly. She put Kay on oxygen and concluded that she was slipping into a coma again and sure enough, Kay started to fade away. She was about (say) 30% conscious, she could respond to questions but her answers made no sense and she became slowly less responsive. She could not move her eyes to the right beyond the centre position. The doctor administered domicum (?) a drug relaxant that helps with seisures. Kay's symptoms started to slowly receed but equally she became very sleepy.
After a while - don't know how long, probably an hour or two - the effects of the drug started wear off. As Kay slowly woke up it seemed that her symptoms merely returned. When she was 'awake', ie responding to questions, her eyes were pointed left and she was still chewing. When she fell asleep the chewing stopped and she appeared more relaxed. However, through all of this she was increasingly complaining about pain/cramp in her tummy, until every now and then she was literally screaming from the pain. Also, the nurses were checking her blood pressure and pupil reaction every hour. Thus it was extremely difficult to get her to sleep and keep her there.
The doctors decided to bring forward the next dose of the anti-epileptic drug. This was administrated around 2am, I think. From that moment onwards her condition slowly improved during the rest of the night. But the tummy pain - a separate and unrelated issue - continued. I was cuddling her constantly and rubbing her tummy. She was given paracetamol, to no great effect. At some point I suggested that we use my trick to relax her and put on some music. Kay liked that idea and it worked very well. The music gave her something to focus on and relaxed her and I had an easier time getting her to sleep and keeping her there. So my thanks goes out to Nora Jones (who I saw on Jools Holland last night), Eva Cassidy, Madeline Peyroux and Katy Melua for giving Kay something of a restful second half of the night. She's lying here now listening to Coldplay. (Frank, I know that you hate Nora Jones but she does deserve some credit here...)
At around 4.30am I managed to close my eyes for the first time and during the next few hours managed to grab some sleep in bursts of about 30 mins. This morning Kay's eyes are working normally and the other symptoms have disappeared for now. But she's very disconnected with the world, which I understand is an initial effect of the anti-epilepsy drug. Also she's extremely weak, cannot sit up in bed and is feeling dizzy. Her total state is very worrying, even though the doctors tell us that she's doing well under the circumstances. But I suspect that they would always say that, wouldn't they? My thinking is that A) the MRI scan showed nothing but the Methatrexate damage and B) that if things were bad we'd be in Njimegen by now.
Today I intend to push the subject of her tummy pain harder with the Doctors. If we can get that sorted out things will become a lot easier because Kay will be able to sleep longer and more easily.
I didn't dare ring Marion during any of this - she would have been back here in a flash (she was at home last night). She really needed a night's sleep and Kay's situation was not threatening, at least on the scale on which we're now operating. I told her about it this morning and she immediately veered towards panic, justifying my decision to leave her be. At least one of us needs to have had a night's rest at any given time. And I don't think having a panic'd, sleep deprived Mama driving through the centre of Eindhoven in the early hours of Saturday morning would have been safe for anyone.
What a bloody nightmare.
Friday, 6 November 2009
Epileptic Coma - Rushed back to hospital
Last night as we went to bed we discovered Kay lying in a catatonic state in her bed. Her breathing & heart beat were normal but her eyes were open and she was completely unresponsive to any external stimuli. I called 112 and Marion called our GP who lives close by. Our GP arrived in a couple of minutes and checked out Kay's vitals, but there was nothing special to see. The paramedics arrived after about 15 mins and checked Kay out too with the same result. So she was unbundled into the ambulance and rushed to the Catherina EHBO. I left a few minutes before the ambulance and was waiting for it when it arrived. During the trip the ambulance had to stop to treat Kay because she had some sort of epileptic attack.
Once in the EHBO the medics started testing Kay's reflexes. She was completely unresponsive, scoring a 0 on their scale of measurement. They administered a drug, not sure what, which very slowly brought Kay out of the coma, firstly very small responses to stimulii in her arms, but by bit spreading through the rest of her system. However she remained unresponsive to aural stimulii, namely Mama and Daddy calling to her to get her to show some sign of consciousness.
I've not mentioned it before, I think, but Kay hates having plasters removed from her skin - she always makes a huge fuss about it. This time the medics had to replace the line into her portal, which meant removing a plaster from her skin. It was a relief to see Kay fighting them like a lion and three of us having to hold her down. But she remained only semi-conscious.
As her condition stabilized, blood was take for screening and she was taken for a CT scan. Since one of her original symptoms was headaches, Marion & I were very concerned that she might have a brain tumour. The paediatrician present was also concerned about the possibility of a bleed into her brain. I can tell you now that it was like taking part in an episode of House, but without the grouchy doctor.
Much to our relief the CT scan and blood work came back pretty clean, though the scan was a cursory one. The paediatrician talked to Nijmegen and the conclusion was reached that she had suffered some kind of epileptic attack as a result of the Methatrexate chemo that she had last week. Apparently this is an uncommon reaction to this drug, especially 10 days after it was administrated.
The upshot was that Kay was admitted to Catherina with the intention of moving her to Nijmegen today. I returned home at about 2.15am and finally fell asleep for a few hours around 3.30. Marion stayed at the hospital and hasn't slept at all, not least because Kay was under constant observation. Marion called me as I was driving home to tell me that Kay had spoken for the first time.
This morning I spoke with Kay and she is very disoriented and extremely upset. But at least she's back in the land of the living.
The latest news is that Nijmegen is so pleased with her progress that instead of being transferred, Kay will have an MR scan this afternoon to check things in detail and if that's OK she will stay in Eindhoven.
I have a meeting with Microsoft this afternoon, which I just don't want to miss. So I'm pulling myself together to make this pitch and then I'll be staying at the Catherina overnight, allowing Marion to be at home and, hopefully, to get a good night's rest.
Last night was the scariest night of my whole life.
Once in the EHBO the medics started testing Kay's reflexes. She was completely unresponsive, scoring a 0 on their scale of measurement. They administered a drug, not sure what, which very slowly brought Kay out of the coma, firstly very small responses to stimulii in her arms, but by bit spreading through the rest of her system. However she remained unresponsive to aural stimulii, namely Mama and Daddy calling to her to get her to show some sign of consciousness.
I've not mentioned it before, I think, but Kay hates having plasters removed from her skin - she always makes a huge fuss about it. This time the medics had to replace the line into her portal, which meant removing a plaster from her skin. It was a relief to see Kay fighting them like a lion and three of us having to hold her down. But she remained only semi-conscious.
As her condition stabilized, blood was take for screening and she was taken for a CT scan. Since one of her original symptoms was headaches, Marion & I were very concerned that she might have a brain tumour. The paediatrician present was also concerned about the possibility of a bleed into her brain. I can tell you now that it was like taking part in an episode of House, but without the grouchy doctor.
Much to our relief the CT scan and blood work came back pretty clean, though the scan was a cursory one. The paediatrician talked to Nijmegen and the conclusion was reached that she had suffered some kind of epileptic attack as a result of the Methatrexate chemo that she had last week. Apparently this is an uncommon reaction to this drug, especially 10 days after it was administrated.
The upshot was that Kay was admitted to Catherina with the intention of moving her to Nijmegen today. I returned home at about 2.15am and finally fell asleep for a few hours around 3.30. Marion stayed at the hospital and hasn't slept at all, not least because Kay was under constant observation. Marion called me as I was driving home to tell me that Kay had spoken for the first time.
This morning I spoke with Kay and she is very disoriented and extremely upset. But at least she's back in the land of the living.
The latest news is that Nijmegen is so pleased with her progress that instead of being transferred, Kay will have an MR scan this afternoon to check things in detail and if that's OK she will stay in Eindhoven.
I have a meeting with Microsoft this afternoon, which I just don't want to miss. So I'm pulling myself together to make this pitch and then I'll be staying at the Catherina overnight, allowing Marion to be at home and, hopefully, to get a good night's rest.
Last night was the scariest night of my whole life.
Thursday, 5 November 2009
More on leaving comments
I know that this blog is read by a lot of Dutch people. Apologies that it's mostly in English. But please feel free to leave your comments in Dutch (or French for that matter, Alex!). The wonderful "Babelfish" website provides pretty good translations for anyone wanting to understand Dutch comments.
Wednesday, 4 November 2009
Out of hospital NOT!
I spoke too soon, so Maron tells me. Kay is suffering stomach pain and the specialist doesn't want to release her until it's sorted out. So no return home this evening. :-(((
Kay's NOT happy about it.
Kay's NOT happy about it.
Out of hospital (again)
Good news: Kay will be allowed out of hospital today. She's been fever free for four days which was the criteria for release. She can't wait.
Tuesday, 3 November 2009
The dreaded moment is approaching
Kay's hair has started to fall out - the moment that we have been dreading. Kay is more or less ignoring the subject at the moment, she refuses to discuss it, which is fine by me. On the other hand Marion is more or less bullying Kay into deciding how she wants to handle the subject. Should Mama cut her hair off? Or should we ask a friend who was once a hairdresser to do it? Should we save her hair for later, maybe get it made into a wig or extensions or what? Marion wants Kay to decide and Kay doesn't want to decide.
Add to this that the Dexa is finally starting to take a hold. This evening Kay is bad tempered and angry at the nurses for waking her up to take her temperature. The pattern of behaviour is recognizably Dexa fueled: irrational, disproportionate and impossible to manage. Kay has been more or less angry with Marion all day since Marion tried to raise the dreaded hair subject this morning. If we're to avoid a Dexa fueled explosion on the subject Marion is going to have to learn to back off and give Kay room to deal with things on her own terms.
In fact, Kay has increasingly been demanding to be left to her own devices with things. She is also developing an intolerence to having too many people around her or to being pressured on any subject. As the Dexa continues to impact her system we will have to be increasingly gentle with her and give her room to find her own equilibruim under the influence of this nasty drug.
I think that the moment that Kay starts to exhibit considerable hair loss - which will be any day now - we will all be confronted with yet another terrible attribute of this awful new reality in which we live. I really am dreading that moment.
Add to this that the Dexa is finally starting to take a hold. This evening Kay is bad tempered and angry at the nurses for waking her up to take her temperature. The pattern of behaviour is recognizably Dexa fueled: irrational, disproportionate and impossible to manage. Kay has been more or less angry with Marion all day since Marion tried to raise the dreaded hair subject this morning. If we're to avoid a Dexa fueled explosion on the subject Marion is going to have to learn to back off and give Kay room to deal with things on her own terms.
In fact, Kay has increasingly been demanding to be left to her own devices with things. She is also developing an intolerence to having too many people around her or to being pressured on any subject. As the Dexa continues to impact her system we will have to be increasingly gentle with her and give her room to find her own equilibruim under the influence of this nasty drug.
I think that the moment that Kay starts to exhibit considerable hair loss - which will be any day now - we will all be confronted with yet another terrible attribute of this awful new reality in which we live. I really am dreading that moment.
Monday, 2 November 2009
Leaving Comments & Contacting Us
Various people have mentioned to me that they have not been able to post comments on the blog. We love to get comments, so I thought that I'd leave some simple instructions here.
At the end of a blog entry click on the "comment" link. Then fill in your comment in the dialog that follows. Where it says "Comment as", "Select Profile", the simplest option is to choose "Anonymous". If you post as "anonymous" the please leave your first name in that text so that we have an idea who posted the comment. Then click on "Post Comment". You will see a word verification dialog intended to stop spam comments. Type in the word that you see presented, then click on the button underneath. Your comment will then be sent to me for moderation, again to prevent unwanted spam appearing. When I have processed it, it will appear in the blog.
Further, please feel free to contact us via email. Again, we love to hear from you and we read your emails and comments to Kay. We can't reply to everything, there are not enough hours in the day already.
At the end of a blog entry click on the "comment" link. Then fill in your comment in the dialog that follows. Where it says "Comment as", "Select Profile", the simplest option is to choose "Anonymous". If you post as "anonymous" the please leave your first name in that text so that we have an idea who posted the comment. Then click on "Post Comment". You will see a word verification dialog intended to stop spam comments. Type in the word that you see presented, then click on the button underneath. Your comment will then be sent to me for moderation, again to prevent unwanted spam appearing. When I have processed it, it will appear in the blog.
Further, please feel free to contact us via email. Again, we love to hear from you and we read your emails and comments to Kay. We can't reply to everything, there are not enough hours in the day already.
(Yet) Another Tough Day
The events of the last 24 hours have been so unpredictable and contrary that I can't begin to describe them here. I'll try just to list the highlights:
Marion is completely physically & emotionally exhausted. This time she had the pleasure of talking Kay into sleep in the operating room, which I can tell you is an experience I'd go a long way to avoid. Plus all the rest.
- Yesterday lunchtime Kay was on antibotics in the Catherina. At that time it was not clear whether she would get the planned Chemo & Bone Marrow today.
- During the afternoon it was decided that the bone marrow could not be missed so Kay would be moved by Ambulance to Nijmegen for this, at least. However, the idea would be to send her back to Eindhoven afterwards. Whether she would be able to have thechemo as well as the bone marrow and the antibiotics was still not clear.
- We agreed that I would spend the night in Eindhoven and Marion would arrive at 8am to travel with Kay to Nijmegen. Since it was not clear whether they would come back to Eindhoven, we had to empty Kay's room. So Marion would store all their stuff in her car.
- Today I had to leave the hospital, take Lauren to Dusseldorf for her flight back the UK and then I had to be at the office for an important meeting.
- Marion arrived at Catherina to find that the transport to Njimegen had been delayed. Note that we saw each other yesterday for 15 mins and haven't seen each other at all today.
- Once at Njimegen it's decided that Kay will have the bone marrow taken under general anasthetic, followed by two chemos. She's also still on the antibiotics.
- During my meeting I got constant updates from Marion on progress. The bone marrow went well. Then Kay got the chemo as well. It was decided that she could go back to Eindhoven, transport booked for 5.30pm. Then Kay threw up from the anasthetic, including her NG tube. Whoopee.
- Then at around 5pm Marion calls to say that Kay had developed an allergic reaction to the second chemo and it was likely that she would have to stay in Nijmegen. Their stuff is in Marion's car in Eindhoven, so I start making plans to drive to Eindhoven, pick up her stuff, drive to Njimegen, drop it off and drive home. But I conclude that I'm just too tired to spend 3 hours running around, so start thinking which of our friends I can call for help.
- But about 6.45pm Marion SMS's to say that they are in the Ambulance on the way back to Eindhoven. I'm thankful that I don't have to ruin anyone else's evening.
- Next call from Marion, she has arrived back in Eindhoven but the hospital resturant is closed so she has to go out to the AH (supermarket) in a hurry to get some food for her and Kay.
Marion is completely physically & emotionally exhausted. This time she had the pleasure of talking Kay into sleep in the operating room, which I can tell you is an experience I'd go a long way to avoid. Plus all the rest.
Marion sent me this photo earlier: Kay recovering from the anasthetic late this afternoon.
I really hope that we can stabilize this situation in the near future. It's really quite hard not to know what we will be doing in the next 6 hours, never mind the next 24.
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