The news of the week is that Natasha's stem cells are not suitable for transplanting to Kay. So the insurance policy that we took out at Natasha's birth hasn't worked out. I'm pretty disappointed about that, it would have been rather uplifting if it had worked out. However the search has begun to find a 3rd party donor. This is potentially a lengthy process. An initial search based on a restricted set of criteria will be made in the global donor database. Matching donors will be requested for a blood sample which will then be subjected to a finer set of compatibility tests at Nijmegen. If a donor is then selected they will then be contacted to see if they are prepared to provide bone marrow. This whole process can be vary in length depending on the number of donors found and the difficulty of finding a suitable match. We have been told that a donor will always be found, but of course the most important thing is that it is a GOOD donor. No one is saying anything about the chance of a good donor being found, probably because they don't yet know.
It is unlikely that a donor will be found before week 14 (we're now in week 11) so in the best case Kay will be put on maintenance chemotherapy until a donor is found. However, if at the next test in a few weeks she is still over the MRD she will under go a further round of intense chemo to achieve the lowest cancer cell count possible before undergoing a transplant. Essentially this all means that we will be living in fairly uncertain circumstances for some weeks to come, hoping that a suitable donor will be found soon.
Kay has come through the last few days of chemo well enough. The asparaginese treatment was completed today with only (relatively) minor upset, I gather from Marion. However the disappointment is that Kay's red cell count was very low, so Kay & Marion have had to stay an extra night in Njmegen while Kay is given some blood. We hope that they will be home early tomorrow. Both are upset by the delay.
The next cycle begins on 7th January, in theory. We should also hear about progress with the donor search at that time. So for the time being we have to hope that Kay stays well and that she doesn't have a cell type that is difficult to match. I guess that The System deliberately doesn't expose us to such details, to minimize emotional rollercoaster effects.
Let's hope that we get a quiet New Year.
Wednesday, 30 December 2009
Saturday, 26 December 2009
Week Update
Last week's chemo hit Kay hard for a few days. Last weekend she was tired, irritable and generally difficult. She eat very little, complaining that food had no taste. However, Kay being Kay, she was fairly active and on Sunday had a friend round to play. It snowed here about 5cms on Sunday and so in the afternoon we all played outside. I tied the sledge to my mountain bike and dragged the girls through the snow, we threw snowballs and for a little while forgot about the larger world in which we live.
During the week Kay recovered her energy, became her usual fun and "normally" difficult self and regained her appetite. She has been fully busy preparing for Christmas and playing with Lauren, Natasha and one or two friends. Yesterday I borrowed a beamer & screen from the office and created a "Home Cinema" and we all watched "Harry Potter and the Half Blood Prince", Marion albeit with half closed eyes. So we have been fortunate to have had somthing close to a normal Christmas so far, although Marion & I feel about as far from normal as one can imagine being.
The event of the week was a meeting with the deputy head of Paedatric Oncology following last weekend's blunder with Kay's medicine - both the Professor and our allocated specialist have been on holiday this week. The deputy head is someone we have not met before, but is head of the transplant team and is therefore someone with whom we will have more contact shortly. She seems to be a very pleasant and professional lady.
The conversation started by her asking after Kay, etc. Then she asked us about our concerns. I put to her my main worry: that Kay has High Risk cancer and is getting High Risk Treatment and that there have now been three blunders that to my mind have gone to increase the risk of the treatment. Further that the problems are all systemic and therefore avoidable, and that Marion & I feel that due to these problems we are having to act as the gatekeepers/quality control managers for Kay's treatment.
It was not necessary to review the itraconasole story, that is recognized. Nor did we have to spend much time talking about Kay being sent home without the right medicines. The asparaginese blunder required more attention. However, when we got down to it, it turns out that the 1st allergic reaction during the 2nd asparaginese treatment had been noted in Kay's records. The deputy explained that at the next treatment the usual procedure would have been to first give anti-allergic drugs and then slow the asparaginese infusion down. She was very surprised when I pointed out that this had not been done and that the medics that appeared to give the treatment had no knowledge of a previous allergic reaction and didn't change the procedure in any way.
As we went through the various errors that had been made the deputy became more and more surprised and unhappy with the treatment that Kay has been given. At one point I related the story about the nurse and the MTX level ("Stories from the week #3") and she became extremely unhappy and said that she would take these matters up with the head of the nursing department as well.
I held my final ace until last, namely that Kay had been getting eye drops to protect her eyes from the last chemo. When we were sent home last weekend I had to ask whether the eye drops needed to be continued. The nurse went away and checked and told me that they had to continue until the 1st January, four times a day. We were given a box containing a bottle with the drops, but there was no label on the box, no dosage or duration instructions. So I took these drops to the meeting and as my last point gave the box/drops to the deputy and asked her whether she could tell me what we were supposed to do with them. Again she looked extremely exasperated and remarked that this just wasn't good enough.
During the discussion and what could be done about these problems, I pointed mentioned that I am a pilot and that I'm used to working with checklists, both when I'm flying and also in the business. So I suggested that they should introduce a patient/parent release form that should contain all the instructions necessary for the care of a child patient at home, details of any further appointments and a list of issued medicines. The parent should sign this form to say that they have received these instructions. The deputy thought this to be a great idea and promised to set about implementing it as standard procedure as soon as possible. Further she promised that from now on she would work closely together with our allocated specialist, supervising Kay's case and that we were to bring any further problems directly to her attention. She assured us that everyone would do their best to ensure that Kay's treatment continues without further ado.
This is about all that we got out of the meeting, but I also suppose that it's about all that we could have expected. We'll have to see whether it makes any difference. However after the fact I have begun to realize just how poor Nijmegen's sytem is in certain areas. Specifically I have long been surpised just how easily they send Kay home and how informal that process is. They don't provide much in the way of instructions about her care at home. They never monitor whether we are giving her the correct treatment/care at home, etc, etc. In fact, I think that on my own I would struggle to manage Kay's medicine regime when she can require 5 or 6 different drugs with different timing during the day. Marion is super organized with these things, but I don't believe that there are too many people around with Marion's organization ability especially under such difficult circumstances. So how does everyone else do it and how does Nijmegen support and monitor these people?
Tomorrow Kay & Marion return to Nijmegen for the start of the next round of chemo, which is largely the same was last week. Two days of cytarabine twice a day. However on the forth day Kay will again get the dreaded asparaginese again. I will be in Nijmegen for that and you can be sure that I will be monitoring the whole process very carefully but at the same time wishing that I didn't have to. Based on this week I expect that Kay will be knocked out again for a few days and will lose her sense of taste. But hopefully she will be recovered in time to enjoy fireworks on New Year's eve.
During the week Kay recovered her energy, became her usual fun and "normally" difficult self and regained her appetite. She has been fully busy preparing for Christmas and playing with Lauren, Natasha and one or two friends. Yesterday I borrowed a beamer & screen from the office and created a "Home Cinema" and we all watched "Harry Potter and the Half Blood Prince", Marion albeit with half closed eyes. So we have been fortunate to have had somthing close to a normal Christmas so far, although Marion & I feel about as far from normal as one can imagine being.
The event of the week was a meeting with the deputy head of Paedatric Oncology following last weekend's blunder with Kay's medicine - both the Professor and our allocated specialist have been on holiday this week. The deputy head is someone we have not met before, but is head of the transplant team and is therefore someone with whom we will have more contact shortly. She seems to be a very pleasant and professional lady.
The conversation started by her asking after Kay, etc. Then she asked us about our concerns. I put to her my main worry: that Kay has High Risk cancer and is getting High Risk Treatment and that there have now been three blunders that to my mind have gone to increase the risk of the treatment. Further that the problems are all systemic and therefore avoidable, and that Marion & I feel that due to these problems we are having to act as the gatekeepers/quality control managers for Kay's treatment.
It was not necessary to review the itraconasole story, that is recognized. Nor did we have to spend much time talking about Kay being sent home without the right medicines. The asparaginese blunder required more attention. However, when we got down to it, it turns out that the 1st allergic reaction during the 2nd asparaginese treatment had been noted in Kay's records. The deputy explained that at the next treatment the usual procedure would have been to first give anti-allergic drugs and then slow the asparaginese infusion down. She was very surprised when I pointed out that this had not been done and that the medics that appeared to give the treatment had no knowledge of a previous allergic reaction and didn't change the procedure in any way.
As we went through the various errors that had been made the deputy became more and more surprised and unhappy with the treatment that Kay has been given. At one point I related the story about the nurse and the MTX level ("Stories from the week #3") and she became extremely unhappy and said that she would take these matters up with the head of the nursing department as well.
I held my final ace until last, namely that Kay had been getting eye drops to protect her eyes from the last chemo. When we were sent home last weekend I had to ask whether the eye drops needed to be continued. The nurse went away and checked and told me that they had to continue until the 1st January, four times a day. We were given a box containing a bottle with the drops, but there was no label on the box, no dosage or duration instructions. So I took these drops to the meeting and as my last point gave the box/drops to the deputy and asked her whether she could tell me what we were supposed to do with them. Again she looked extremely exasperated and remarked that this just wasn't good enough.
During the discussion and what could be done about these problems, I pointed mentioned that I am a pilot and that I'm used to working with checklists, both when I'm flying and also in the business. So I suggested that they should introduce a patient/parent release form that should contain all the instructions necessary for the care of a child patient at home, details of any further appointments and a list of issued medicines. The parent should sign this form to say that they have received these instructions. The deputy thought this to be a great idea and promised to set about implementing it as standard procedure as soon as possible. Further she promised that from now on she would work closely together with our allocated specialist, supervising Kay's case and that we were to bring any further problems directly to her attention. She assured us that everyone would do their best to ensure that Kay's treatment continues without further ado.
This is about all that we got out of the meeting, but I also suppose that it's about all that we could have expected. We'll have to see whether it makes any difference. However after the fact I have begun to realize just how poor Nijmegen's sytem is in certain areas. Specifically I have long been surpised just how easily they send Kay home and how informal that process is. They don't provide much in the way of instructions about her care at home. They never monitor whether we are giving her the correct treatment/care at home, etc, etc. In fact, I think that on my own I would struggle to manage Kay's medicine regime when she can require 5 or 6 different drugs with different timing during the day. Marion is super organized with these things, but I don't believe that there are too many people around with Marion's organization ability especially under such difficult circumstances. So how does everyone else do it and how does Nijmegen support and monitor these people?
Tomorrow Kay & Marion return to Nijmegen for the start of the next round of chemo, which is largely the same was last week. Two days of cytarabine twice a day. However on the forth day Kay will again get the dreaded asparaginese again. I will be in Nijmegen for that and you can be sure that I will be monitoring the whole process very carefully but at the same time wishing that I didn't have to. Based on this week I expect that Kay will be knocked out again for a few days and will lose her sense of taste. But hopefully she will be recovered in time to enjoy fireworks on New Year's eve.
Friday, 25 December 2009
Kay's Christmas Day
In the run up to Christmas I have not had any time (or energy) to write for the blog, I'll catch up in the next few days. Kay's next chemo cycle starts in Nimegen tomorrow until (in theory) the 29th. Hopefully she will receover in time to celebrate New Year.
Today she is full of life and energy. Here are few photos of the day so far...
Today she is full of life and energy. Here are few photos of the day so far...
Saturday, 19 December 2009
Medical Blunder #3
Marion & I are shaking like leaves: the hospital sent Kay home today without one of her most important medicines, dexamethasone. It was only because Marion is so careful and organized with Kay's home medication that she spotted the mistake. She knew that dexa was started at the hospital on Thursday and that it should run for 5 days. So when she was checking the medicine that I brought home today, she noticed the missing dexa.
I have to say that this mistake escaped me completely and if it had been down to me, Kay would have missed out on dexa for the coming days. Dexa is an important element of the chemo cycle, having an amplifying effect on the vincristine that Kay was given on Thursday. Note that not only were we not given dexa, we were not even given a prescription for it.
Marion phoned the children's oncology ward to report the mistake and to find out what to do about it. In principle a prescription would have to be issued that we would have to take to a pharmacy that stocks the stuff. Inevitably this would mean driving to Nijmegen and back (it's -8 degrees and cooling outside). By sheer luck Marion still had the remains of a previous dexa prescription in the "to be thrown away" medicine box. The reason that we still had still was due to one of Kay's previous sudden admissions.
We're terrified. This is a child who is not under the MRD, a child who missed 1.5x vincristine treatments because of the itraconasole story and who now could have missed another important component of her treatment due to a stupid mistake, another failure of communication at Nijmegen. This is a child who faces having a bone marrow transplant in an environment where "The System" cannot be trusted and where we MUST police every aspect of her treatment.
The stress of being a parent is bad enough. In fact at the moment we're both scared stupid by the idea that Kay has to undergo a transplant. But add to that the fact that our confidence in a system that has now made 3 medical blunders and numerous other errors of poor communication has reach an all time low and both of us are absolutely at breaking point. We have seriously discussed taking Kay out of Nijmegen to one of the other academic hospitals in the Netherlands. We will definitely file a formal complaint about all this, but, frankly, I don't expect that to heal our broken confidence. In the end we have demanded to sit round the table at the earliest opportunity with the departmental Professor in order to aire our grievences.
The problem with Nijmegen is not the professionalism of the staff, we have confidence in the individuals with whom we deal. The problem is with "The System", namely the communication between the various disciplines that deal with the patient. At one point I asked to talk to someone in charge of "The System" and was met with blank stares. "Was it a medical problem or a nursing problem?", I was asked. Which is of course exactly the point: there is NO ONE responsible for delivery of ALL care to the patient. This is the role that Marion & I are having to fill, two people who are non-experts and worried, if not terrified, parents. How on earth can we be expected to systematically ensure delivery of the correct care/treatment to Kay?
I am sat here oscillating between incandesent rage, knee trembling fear for Kay, worry about taking on/criticizing the system/staff on which the life of our daughter depends, disbelief that this could be happening and a bone deep tiredness/resignation that Marion & I have to pit ourselves (again) against an entirely unfair problem.
I have to say that I'm very very close to calling in every lawyer and journalist I know so that someone else can take over the job of screaming from the rooftops about this problem c.q. representing the interests of the patient and Marion & I can go back to being just what it's enough being: Kay's loving parents.
I have to say that this mistake escaped me completely and if it had been down to me, Kay would have missed out on dexa for the coming days. Dexa is an important element of the chemo cycle, having an amplifying effect on the vincristine that Kay was given on Thursday. Note that not only were we not given dexa, we were not even given a prescription for it.
Marion phoned the children's oncology ward to report the mistake and to find out what to do about it. In principle a prescription would have to be issued that we would have to take to a pharmacy that stocks the stuff. Inevitably this would mean driving to Nijmegen and back (it's -8 degrees and cooling outside). By sheer luck Marion still had the remains of a previous dexa prescription in the "to be thrown away" medicine box. The reason that we still had still was due to one of Kay's previous sudden admissions.
We're terrified. This is a child who is not under the MRD, a child who missed 1.5x vincristine treatments because of the itraconasole story and who now could have missed another important component of her treatment due to a stupid mistake, another failure of communication at Nijmegen. This is a child who faces having a bone marrow transplant in an environment where "The System" cannot be trusted and where we MUST police every aspect of her treatment.
The stress of being a parent is bad enough. In fact at the moment we're both scared stupid by the idea that Kay has to undergo a transplant. But add to that the fact that our confidence in a system that has now made 3 medical blunders and numerous other errors of poor communication has reach an all time low and both of us are absolutely at breaking point. We have seriously discussed taking Kay out of Nijmegen to one of the other academic hospitals in the Netherlands. We will definitely file a formal complaint about all this, but, frankly, I don't expect that to heal our broken confidence. In the end we have demanded to sit round the table at the earliest opportunity with the departmental Professor in order to aire our grievences.
The problem with Nijmegen is not the professionalism of the staff, we have confidence in the individuals with whom we deal. The problem is with "The System", namely the communication between the various disciplines that deal with the patient. At one point I asked to talk to someone in charge of "The System" and was met with blank stares. "Was it a medical problem or a nursing problem?", I was asked. Which is of course exactly the point: there is NO ONE responsible for delivery of ALL care to the patient. This is the role that Marion & I are having to fill, two people who are non-experts and worried, if not terrified, parents. How on earth can we be expected to systematically ensure delivery of the correct care/treatment to Kay?
I am sat here oscillating between incandesent rage, knee trembling fear for Kay, worry about taking on/criticizing the system/staff on which the life of our daughter depends, disbelief that this could be happening and a bone deep tiredness/resignation that Marion & I have to pit ourselves (again) against an entirely unfair problem.
I have to say that I'm very very close to calling in every lawyer and journalist I know so that someone else can take over the job of screaming from the rooftops about this problem c.q. representing the interests of the patient and Marion & I can go back to being just what it's enough being: Kay's loving parents.
Friday, 18 December 2009
Transplant Consequences
Kay has been having a rough time with the current chemo. She had a bad night and a difficult day. No particular medical reasons, just the (accumulated) effects of the chemo. She is grumpy and short tempered. Wants to eat but doesn't want to eat. Tired but doesn't want to sleep. Etc. However, tomorrow we should be able to head home, an event that is even more attractive than usual for the reasons below.
This evening we have had a follow up meeting with our specialist about the consequences of a bone marrow transplant. I plan to read all I can on the subject shortly. In the meantime I shall repeat what we have been told. On the subject of donors, there are three options: a sybling, the donor bank or as a final resort, a parent. In principle a donor is always to be found from the first two alternatives. We have the potential advantage that Natasha's stem cells are available, since when she was born blood from her umblical cord was taken as a potential insurance policy for Kay. (Long story, for another time). We heard today that these cells are still available and there is enough volume for a transplant. Both Kay's cells and Natasha's stem cells will typed next week to see if they are compatible. I hope that we can make use of this (amazing) insurance policy.
On the subject of timing, at lot depends on details. If all goes well the transplant could be in 10 weeks. But this could be delayed depending on the availability of donor cells and further a MRD measurement. In either case we don't know how long the resultant delay would be.
On the subject of the transplant itself, preparation takes 10 days - a countdown to the transplant itself. Then recovery takes minimally 4-6 weeks. So we can expect to stay a minimum of 2 months in hospital if all goes well. Any infections mean that the stay will be extended. Once her system has recovered enough for her to leave hospital she will have to stay at home for 4-6 months. No school! This means that once the transplant takes place Kay will not return to school this school year.
The idea of two months in hospital means that every minute spent at home between now and then will be a valuable, treasured minute. Kay is already looking forward to her post-hospital bath tomorrow!
This evening we have had a follow up meeting with our specialist about the consequences of a bone marrow transplant. I plan to read all I can on the subject shortly. In the meantime I shall repeat what we have been told. On the subject of donors, there are three options: a sybling, the donor bank or as a final resort, a parent. In principle a donor is always to be found from the first two alternatives. We have the potential advantage that Natasha's stem cells are available, since when she was born blood from her umblical cord was taken as a potential insurance policy for Kay. (Long story, for another time). We heard today that these cells are still available and there is enough volume for a transplant. Both Kay's cells and Natasha's stem cells will typed next week to see if they are compatible. I hope that we can make use of this (amazing) insurance policy.
On the subject of timing, at lot depends on details. If all goes well the transplant could be in 10 weeks. But this could be delayed depending on the availability of donor cells and further a MRD measurement. In either case we don't know how long the resultant delay would be.
On the subject of the transplant itself, preparation takes 10 days - a countdown to the transplant itself. Then recovery takes minimally 4-6 weeks. So we can expect to stay a minimum of 2 months in hospital if all goes well. Any infections mean that the stay will be extended. Once her system has recovered enough for her to leave hospital she will have to stay at home for 4-6 months. No school! This means that once the transplant takes place Kay will not return to school this school year.
The idea of two months in hospital means that every minute spent at home between now and then will be a valuable, treasured minute. Kay is already looking forward to her post-hospital bath tomorrow!
Thursday, 17 December 2009
MRD Result
The MRD is above the limit for continued chemotherapy. Thus, Kay needs a bone marrow transplant.
Report from the last week
Week 8 of the treatment was a rest week. Initially Kay was very well. She went to school for a couple of half days and was generally very active. However, a check on Thursday showed that her blood levels were very low and that she needed a transfusion. The immediate consequence of this was that the chemo planned for Monday was postponed and a new check was arranged for the following Wednesday (yesterday).
Normally Kay brightens up, literally, from a blood transfusion. Her skin tone becomes pinker, she gets more energy and generally becomes more cheerful. This time the transfusion had little effect. On Saturday she was so tired and low on energy that she spent practically the whole day in bed, watching TV. She complained of being cold all the time. On Sunday she was a bit better, but still not very good and still cold. She was extremely short tempered with everything, tired, complaining and just not her usual self.
On Monday morning she got up with the idea of going to school, but once sat at the breakfast table she decided that she was so tired that she wanted to go back to bed. I was pretty concerned by the total picture presented. So I phoned the hospital and we were summoned for a check. Although her blood levels were low the doctor said that she was 'merely' suffering from the accumulated effects of chemo. Feeling the cold is apparently a typical side effect of chemo. So we returned home and during the next days she improved significantly. Yesterday she had the planned 2nd check and her white cell count was still low, but improved enough for the chemo to take place today.
So today we drove through the snow to Nijmegen. The Jag is pretty tricky when there's white stuff under the tyres, so I had my hands full for the 1:45 that it took to get here. By the time we arrived I was pretty damned tired. Treatment began pretty much immediately on arrival. A line was put into her portal and the first chemo, vincristine, was swiftly administered. A little later she was given a mild anaesthetic, which always makes her wonderfully funny and entertaining, and a spinal injection of methatrexate was given. Finally the first dose of a new-to-us chemo was delivered via infusion over a period of three hours. She will have this again tonight, tomorrow and tomorrow night. If all goes well we will be home on Saturday.
However, as I write this, she's starting to feel the effects of all these toxins. She's complaining of pain all over and of being too warm. Nothing worrying so far. But we've still got a way to go yet.
Because of the delay, next week's chemo has moved up. In principle it should have started on Thursday and kept us here over Christmas. But the plan is now to start on the 26th.
Anyway the specialist has just arrived to talk to us about the MRD.
Normally Kay brightens up, literally, from a blood transfusion. Her skin tone becomes pinker, she gets more energy and generally becomes more cheerful. This time the transfusion had little effect. On Saturday she was so tired and low on energy that she spent practically the whole day in bed, watching TV. She complained of being cold all the time. On Sunday she was a bit better, but still not very good and still cold. She was extremely short tempered with everything, tired, complaining and just not her usual self.
On Monday morning she got up with the idea of going to school, but once sat at the breakfast table she decided that she was so tired that she wanted to go back to bed. I was pretty concerned by the total picture presented. So I phoned the hospital and we were summoned for a check. Although her blood levels were low the doctor said that she was 'merely' suffering from the accumulated effects of chemo. Feeling the cold is apparently a typical side effect of chemo. So we returned home and during the next days she improved significantly. Yesterday she had the planned 2nd check and her white cell count was still low, but improved enough for the chemo to take place today.
So today we drove through the snow to Nijmegen. The Jag is pretty tricky when there's white stuff under the tyres, so I had my hands full for the 1:45 that it took to get here. By the time we arrived I was pretty damned tired. Treatment began pretty much immediately on arrival. A line was put into her portal and the first chemo, vincristine, was swiftly administered. A little later she was given a mild anaesthetic, which always makes her wonderfully funny and entertaining, and a spinal injection of methatrexate was given. Finally the first dose of a new-to-us chemo was delivered via infusion over a period of three hours. She will have this again tonight, tomorrow and tomorrow night. If all goes well we will be home on Saturday.
However, as I write this, she's starting to feel the effects of all these toxins. She's complaining of pain all over and of being too warm. Nothing worrying so far. But we've still got a way to go yet.
Because of the delay, next week's chemo has moved up. In principle it should have started on Thursday and kept us here over Christmas. But the plan is now to start on the 26th.
Anyway the specialist has just arrived to talk to us about the MRD.
MRD Result Known...
...but we're waiting for a meeting with the specialist to know what it is and what it means. The meeting is at 16:30 today. More later...
Sunday, 6 December 2009
Quiet Sunday
This photo says all you need to know about today...
Jill and Kay, snoozing on the sofa.
Saturday, 5 December 2009
Weekend Scare
Late on Friday evening Kay started to complain of nausea. There was little that we could do, but she did need to take her medicine, via the NG tube. We now have some new medicines to replace the ciproxin and intraconasole, a new fungicide and a new antibiotic. Also Kay's magnesium level was too low, so we had to give a liquid for that too. Together with the anti-epileptic drug, this is quite a collection. So Marion was busy for a while sorting this out. Then she took Kay to bed.
A few minutes later all hell broke loose upstairs. Kay had been sick, everything was now on the carpet of the guest bedroom and her NG tube had come out as well. Whoopeee. At 10pm I called the equivalent of the district nurse to get the NG tube put back in, who duly arrived at 10:45. There was then a fair struggle to wake Kay up and get her to swallow a new tube, followed by a new dose of medicine. In the end, out of pure exhaustion Marion just gave her the most important things and then collapsed asleep on the sofa.
At 3:45 I was woken by the sound of Kay crying loudly. I found her on the loo, complaining about a lot of pain in her shoulders and her left knee, that the pain was so much that she couldn't get off the loo. So I picked her up and took her to our bed and then checked her out. No sign of bruising, swelling or other marks. No fever, just a lot of pain. So I gave her the alternative of paracetamol or a call to the hospital, which would most likely result in a visit. Paracetamol it was. But since Kay was now in my bed, I had to find somewhere else. Kay & Nattie had been in the guest room sharing a bed, but on Kay's side the smell of vomit was too strong for me. I'm too big for either of their own beds so I ended up down on the sofa. After a few hours of not sleeping there, I decided to climb into the guest bed with Nattie and bury my nose in the pillow. Thus I got a few hours sleep.
Next moring Kay was still in great pain from her shoulders and knee. I phoned the hospital and, surprise surprise, we had to head back. Shortly after Kay again began to feel nauseous and refused to take her medicine. This worried me, since it could represent another reason to keep us at the hospital. 5th December is when Sint delivers presents and in the afternoon Kay's teacher was coming round so that Kay could give her the 'surprise' that she had made. Whatever happened we didn't want to have to stay in the hospital.
We arrived on the ward at around 11am and the duty doctor saw Kay immediately. She couldn't see anything wrong and assumed that the pain was still from the ciproxin and the nausea from a week of chemo. However she had some blood tests run and arranged for Kay's knee to be x-rayed. After a while of anxiously waiting, the results came back. Kay's Hb levels had even increased over the day before and the x-ray showed no problems. So we were sent home with additional medicine: a strong painkiller to combat the shoulder and knee pain.
Both Kay and I were hugely relieved to be back in the car heading home. We arrived back around 3pm and shortly after 'Juf' Esther arrived to get her present. But she also brought with her a FANTASTIC picture that she and Kay's classmates had painted. See the photo below...
A few minutes later all hell broke loose upstairs. Kay had been sick, everything was now on the carpet of the guest bedroom and her NG tube had come out as well. Whoopeee. At 10pm I called the equivalent of the district nurse to get the NG tube put back in, who duly arrived at 10:45. There was then a fair struggle to wake Kay up and get her to swallow a new tube, followed by a new dose of medicine. In the end, out of pure exhaustion Marion just gave her the most important things and then collapsed asleep on the sofa.
At 3:45 I was woken by the sound of Kay crying loudly. I found her on the loo, complaining about a lot of pain in her shoulders and her left knee, that the pain was so much that she couldn't get off the loo. So I picked her up and took her to our bed and then checked her out. No sign of bruising, swelling or other marks. No fever, just a lot of pain. So I gave her the alternative of paracetamol or a call to the hospital, which would most likely result in a visit. Paracetamol it was. But since Kay was now in my bed, I had to find somewhere else. Kay & Nattie had been in the guest room sharing a bed, but on Kay's side the smell of vomit was too strong for me. I'm too big for either of their own beds so I ended up down on the sofa. After a few hours of not sleeping there, I decided to climb into the guest bed with Nattie and bury my nose in the pillow. Thus I got a few hours sleep.
Next moring Kay was still in great pain from her shoulders and knee. I phoned the hospital and, surprise surprise, we had to head back. Shortly after Kay again began to feel nauseous and refused to take her medicine. This worried me, since it could represent another reason to keep us at the hospital. 5th December is when Sint delivers presents and in the afternoon Kay's teacher was coming round so that Kay could give her the 'surprise' that she had made. Whatever happened we didn't want to have to stay in the hospital.
We arrived on the ward at around 11am and the duty doctor saw Kay immediately. She couldn't see anything wrong and assumed that the pain was still from the ciproxin and the nausea from a week of chemo. However she had some blood tests run and arranged for Kay's knee to be x-rayed. After a while of anxiously waiting, the results came back. Kay's Hb levels had even increased over the day before and the x-ray showed no problems. So we were sent home with additional medicine: a strong painkiller to combat the shoulder and knee pain.
Both Kay and I were hugely relieved to be back in the car heading home. We arrived back around 3pm and shortly after 'Juf' Esther arrived to get her present. But she also brought with her a FANTASTIC picture that she and Kay's classmates had painted. See the photo below...
Friday, 4 December 2009
Stories from the week (3)
Thursday evening a nurse walks in carrying a couple of bags of fluid and looks at Kay and pulls a sad face and says “Your MTX level is too high”. So I say, “What?”. She says “Her MTX level is too high”. So I say, “She hasn’t had MTX, that was last week”. Nurse looks confused for a minute, then says, “Ooopps, I’m in the wrong room!”.
Hmmmm..... don't leave your child unsupervised for any length of time here.
Hmmmm..... don't leave your child unsupervised for any length of time here.
Stories from the week (2)
It would not have been a normal week in Nijmegen without the now customary bizzare medical happenings. On Wednesday evening we had a planned meeting with the specialist in charge of kay's case. Actually, I gather he's not really in charge of Kay's case. He's just our contact person and his specialism is lymphoma. The leukemia specialist is The Professor himself, but Kay's case is actually dealt with by a review panel.
As we walk into his office, the specialist opens the conversation by saying, "So have you made a decision regarding a bone marrow transplant?". I was instantly alert, "Sorry, what do you mean?". So the specialist starts to tell us that medical technology has moved on greatly in recent years and that bone marrow transplants are not nearly as risky as they once were. In fact transplants from parents who's cell type only half matches that of the recipient are increasingly successful, etc, etc. My interpretation was that we were being offered a choice as to whether Kay should have a bone marrow transplant or not.
To put this in perspective, the first 5 weeks of the protocol are the Induction Phase. At the end of week 5 a bone marrow sample is taken and tested to see if it the cancer cell count has dropped below Minimum Residual Disease (MRD). We have been waiting now nearly two weeks for the result of the MRD test, which takes 2-3 weeks. If the MRD level is lower than a certain figure then we had been given to understand that the protocol would continue based only on chemotherapy. However if the MRD is higher than this figure, further treatment would lead automatically to a bone marrow transplant, the reason being that the higher count indicates that some cell types have possibly become desensitized to the chemo. From week 5 to week 13, the Consolidation Phase, the treatment remains largely the same, but after week 13 things differ depending on the MRD result. It had never been suggested to us that we had a choice in whether Kay got a bone marrow transplant or not.
So, back to the conversation: The specialist tells us that the results of a bone marrow transplant are nearly as good as those from continued chemo. In fact there is a view that in some cases the fact that the child had a high MRD and ended up having a bone marrow transplant could have been the factor that saved their lives on the long run... The major risk of bone marrow transplants these days is viral infection. So of course we asked how that could be controlled and the answer was more or less that it couldn't, it was pot luck.
Since were being asked to form a view c.q. make a decision about a possible transplant, my mind went into overdrive. I have been reading a book about Hematology recently, which has given me a vague outline of the issues involved. So I set about asking a variety of amateur questions to try and understand the issues involved in such a decision. Eg, can a patient who has had two years of chemo then have a bone marrow transplant? Can a patient who has had a bone marrow transplant have chemo? Etc, etc. But of course in the end one has to get the opinion of the specialist themselves. So Marion asked the relevant question: "What do you recommend?". The answer was even more puzzling than the previous conversation: "I recommend following the protocol". Hmm.... what does that mean? So I said that I didn't understand. Did the protocol allow us a decision or not? Then the specialist looked confused. So I explained: at what point are we supposed to make a decision and how does this related to the MRD result? Then the light apparently went on with the specialist. "No, no", he said, "The MRD does indeed dictate whether the patient gets a transplant or not. But some parents worry that a transplant is very dangerous. I was merely trying to explain that a transplant is not any more dangerous then two years of chemo and in fact can sometimes been seen as potentially a better treatment for some patients." Well, OK, fine. However, even as I sit here writing this I still don't understand why the conversation started with a question about our decision. In fact, I don't really understand it at all, except that the specialist was trying to put us at ease in case the MRD turns out to be negative.
You know, I wasn't worried about that at all in the first place. But I am now. Actually the biggest effect of this conversation was to remind me that we are indeed playing with fire, that we have a dangerously sick child on our hands and that the relative ease of this whole week has been an illusion.
As we walk into his office, the specialist opens the conversation by saying, "So have you made a decision regarding a bone marrow transplant?". I was instantly alert, "Sorry, what do you mean?". So the specialist starts to tell us that medical technology has moved on greatly in recent years and that bone marrow transplants are not nearly as risky as they once were. In fact transplants from parents who's cell type only half matches that of the recipient are increasingly successful, etc, etc. My interpretation was that we were being offered a choice as to whether Kay should have a bone marrow transplant or not.
To put this in perspective, the first 5 weeks of the protocol are the Induction Phase. At the end of week 5 a bone marrow sample is taken and tested to see if it the cancer cell count has dropped below Minimum Residual Disease (MRD). We have been waiting now nearly two weeks for the result of the MRD test, which takes 2-3 weeks. If the MRD level is lower than a certain figure then we had been given to understand that the protocol would continue based only on chemotherapy. However if the MRD is higher than this figure, further treatment would lead automatically to a bone marrow transplant, the reason being that the higher count indicates that some cell types have possibly become desensitized to the chemo. From week 5 to week 13, the Consolidation Phase, the treatment remains largely the same, but after week 13 things differ depending on the MRD result. It had never been suggested to us that we had a choice in whether Kay got a bone marrow transplant or not.
So, back to the conversation: The specialist tells us that the results of a bone marrow transplant are nearly as good as those from continued chemo. In fact there is a view that in some cases the fact that the child had a high MRD and ended up having a bone marrow transplant could have been the factor that saved their lives on the long run... The major risk of bone marrow transplants these days is viral infection. So of course we asked how that could be controlled and the answer was more or less that it couldn't, it was pot luck.
Since were being asked to form a view c.q. make a decision about a possible transplant, my mind went into overdrive. I have been reading a book about Hematology recently, which has given me a vague outline of the issues involved. So I set about asking a variety of amateur questions to try and understand the issues involved in such a decision. Eg, can a patient who has had two years of chemo then have a bone marrow transplant? Can a patient who has had a bone marrow transplant have chemo? Etc, etc. But of course in the end one has to get the opinion of the specialist themselves. So Marion asked the relevant question: "What do you recommend?". The answer was even more puzzling than the previous conversation: "I recommend following the protocol". Hmm.... what does that mean? So I said that I didn't understand. Did the protocol allow us a decision or not? Then the specialist looked confused. So I explained: at what point are we supposed to make a decision and how does this related to the MRD result? Then the light apparently went on with the specialist. "No, no", he said, "The MRD does indeed dictate whether the patient gets a transplant or not. But some parents worry that a transplant is very dangerous. I was merely trying to explain that a transplant is not any more dangerous then two years of chemo and in fact can sometimes been seen as potentially a better treatment for some patients." Well, OK, fine. However, even as I sit here writing this I still don't understand why the conversation started with a question about our decision. In fact, I don't really understand it at all, except that the specialist was trying to put us at ease in case the MRD turns out to be negative.
You know, I wasn't worried about that at all in the first place. But I am now. Actually the biggest effect of this conversation was to remind me that we are indeed playing with fire, that we have a dangerously sick child on our hands and that the relative ease of this whole week has been an illusion.
Stories from the week (1)
I've been quiet for some days, mostly because when I've had time to write a blog entry I have been too tired. Thus, not to say that there hasn't been anything happening.
Kay's treatment has been 2 different type of chemo per day for the last five days. She has not had too much difficulty with these chemos apart from some nausea which was quickly dealt with. However on Wednesday night she woke up complaining of pain in her shoulders and left wrist. The doctor was duly summoned but couldn't find anything so a painkiller was prescribed. The next morning the pain was still present and slowly receded as Kay started to move around. The duty doctor took a look and decided that it was a side effect from the ciproxin anti-biotic that Kay was getting as protection. So the cirpoxin was duly stopped. This meant that of the three protective medicines that Kay was originally proscribed, two had produced side effects (itraconasole being the other) and had been stopped. So I made of point of this and it was promised that they would come up with alternatives.
Kay has been busy all week with all sorts of things. She made a 'surprise' present for her school teacher for the 'Sint' celebration. She has had an hour of school per day. She had been doing homework, etc. In fact, considering that she was being pumped full of chemo she has been very industrious. On Tuesday the Director of the hospital TV station dropped by and asked Kay if she would like to star in an episode of the hospital's kids soap, "Good Days, Bad Days" - a rip-off of a welll know Dutch TV soap akin to Neighbours or something. Kay was up for it, so on Wednesday the filming took place. We have since been given a copy of the result and I'm extremely impressed by the professionality of the production.
In short the story is that Kay's favourite horse had been stolen. So Kay hires in a PI to track down the missing animal. At the same time 'Sint' discovers that his famous horse will not be allowed to leave Spain to come to the Netherlands because of fears of the "Spanish Horse Flu". So an enterprising 'Piet' (one of Sint's helpers) decides to nick the nearest, bestest horse, namely Kay's favourite horse. But in the process he looses the horse and has to set about finding it. There ensues the usual tom-foolery between the PI and the Piet and of course they both find the horse at the same time, etc, etc. Great stuff! The hospital sure knows how to keep children busy and entertained.
On Friday Kay was given the final chemo, check out and sent home. Now we're looking forward to a next week, namely a week of no treatment, no hospital, no doctors. Just home, rest and a small dose of something approaching "normality". Fingers crossed.
Kay's treatment has been 2 different type of chemo per day for the last five days. She has not had too much difficulty with these chemos apart from some nausea which was quickly dealt with. However on Wednesday night she woke up complaining of pain in her shoulders and left wrist. The doctor was duly summoned but couldn't find anything so a painkiller was prescribed. The next morning the pain was still present and slowly receded as Kay started to move around. The duty doctor took a look and decided that it was a side effect from the ciproxin anti-biotic that Kay was getting as protection. So the cirpoxin was duly stopped. This meant that of the three protective medicines that Kay was originally proscribed, two had produced side effects (itraconasole being the other) and had been stopped. So I made of point of this and it was promised that they would come up with alternatives.
Kay has been busy all week with all sorts of things. She made a 'surprise' present for her school teacher for the 'Sint' celebration. She has had an hour of school per day. She had been doing homework, etc. In fact, considering that she was being pumped full of chemo she has been very industrious. On Tuesday the Director of the hospital TV station dropped by and asked Kay if she would like to star in an episode of the hospital's kids soap, "Good Days, Bad Days" - a rip-off of a welll know Dutch TV soap akin to Neighbours or something. Kay was up for it, so on Wednesday the filming took place. We have since been given a copy of the result and I'm extremely impressed by the professionality of the production.
In short the story is that Kay's favourite horse had been stolen. So Kay hires in a PI to track down the missing animal. At the same time 'Sint' discovers that his famous horse will not be allowed to leave Spain to come to the Netherlands because of fears of the "Spanish Horse Flu". So an enterprising 'Piet' (one of Sint's helpers) decides to nick the nearest, bestest horse, namely Kay's favourite horse. But in the process he looses the horse and has to set about finding it. There ensues the usual tom-foolery between the PI and the Piet and of course they both find the horse at the same time, etc, etc. Great stuff! The hospital sure knows how to keep children busy and entertained.
On Friday Kay was given the final chemo, check out and sent home. Now we're looking forward to a next week, namely a week of no treatment, no hospital, no doctors. Just home, rest and a small dose of something approaching "normality". Fingers crossed.
Tuesday, 1 December 2009
So far, all quiet
Kay had a very busy and 'normal' weekend. On Friday morning she burst into our bedroom at 7:15, fully clothed and demanding to go to school. She went to school for the morning and in the afternoon played with a friend for a few hours. On Saturday she was busy doing all sorts of things, together with Natasha and one of her friends, including baking 'pepernoten'. Sunday was pretty much the same. On Sunday evening Marion & Kay headed back to Nijmegen and this time ended up in a very nice single room with a beautiful view and (fortunately) good mobile & internet reception (the last room was in the heart of the building and had terrible mobile reception, which is a disaster for the modern, connected family).
Yesterday her chemo cycle for this week started. So far nothing special to report, she seems fine and this morning is busy playing on her iTouch, waiting for the next dose to start.
Yesterday her chemo cycle for this week started. So far nothing special to report, she seems fine and this morning is busy playing on her iTouch, waiting for the next dose to start.
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