Insurance is not what is should be...

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.

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.

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...

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.

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!

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.

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...

Quiet Sunday

This photo says all you need to know about today...

Jill and Kay, snoozing on the sofa.

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...

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.

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.

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.

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.

At home...

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.

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.

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...

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.

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.

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.

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!

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.

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.

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.

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.

Plundering Natasha's Sweety Bag

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.

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...

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.

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.

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.

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.

Hooray! Kay is home!

Enough said.

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.

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.

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.

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.

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.

(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:

1. 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.
   
2. 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.
   
3. 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.
   
4. 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.
   
5. 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.
   
6. 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.
   
7. 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.
   
8. 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.
   
9. 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.
   
10. 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.

As of the last call Kay will remain in hospital tomorrow, so I shall be up early to take my turn. Kay has already given me a list of things that she wants, including a Hary Potter DVD, the rest of Series 6 of 24, which we started watching yesterday evening and a bunch of other stuff. No knowing when she will be coming home again.

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.

A Few Rough Days

Thursday night Kay unfortunately managed to pull out her feeding tube, resulting in another call to the HomeHelp. So it was very late before Marion got to bed - I was already knocked out from the previous few days. Marion decided to sleep on a camp bed in Kay's room since Kay was very restless from the day and claimed that she couldn't sleep. The result was that Marion had a bad night, made worse by the feed pump which kept throwing off alarms. Friday morning Marion looked like she had been run over by a tractor.

However, life goes on. I went to work and Marion plodded on through the day. My intention was to come home from work early, but you know how it is, there's always one more thing that needs to be done... So I got home around the normal time.

Around 6pm Kay started complaining of pain in her tummy. The chemo that she gets causes constipation, so she'd already been getting a laxative. But we decided to give her a double dose on Friday evening to help ease her system. Unfortunately it didn't seem to help. Kay was in pain all evening and into the night. We tried everything we could think of, paracetamol, hot water bottle, frequent trips to the loo. We moved her into our bedroom so that we could keep an eye on her, but this had the effect that neither of us got any sleep.

Around 1.30am I wanted confirmation that it really was constipation so I phoned the hospital. Nearly an hour later the doctor phoned me back and we went through the symptoms. The doctor concluded that is was constipation and that we should tough it out (haha, poor pun), but that if we felt it was getting worse we'd have to bring her in for an enema. Fortunately shortly after her system started to calm down and in the end we managed a few hours sleep. But today, we're again completely wiped out.

Marion went off to sort some things out this morning. I kept an eye on Kay while doing some admin. However Kay again started complaining of tummy pain, this time up near her ribs. I checked her a couple of times and felt that she was a little too warm. So I got the thermometer and took her temperature - it's one of those underarm things that peeps when it has reach a stable temperature. However the temperature just kept on rising. When it got to 38.2, as per instructions, I called the emergency room at the Catherina Hospital. They told us to bring Kay straight in and they'd run some blood tests. So Marion is now with Kay at the hospital and...

...Marion just called while I was writing this. Kay has an unidentified infection that means she will be admitted and given antibiotics immediately. The course will last for three days. All plans for treatment are now on hold, we'll hear more tomorrow. The good news is that her red cell count is good and her white cell count is down further, 0.5, which is also good. However some other component of her blood is way too low and indicates the presence of an infection. For now Marion & I have to work out how to rearrange our weekend accordingly. Who stays at the hospital and what do we need, etc, etc.

Fortunately Mum & my Aunt arrive tomorrow for a week so we will have some backup at home during the next days.

No need to invent a fire-and-brimstone-hell, this is worse.

Kay's Report from Thursday

ik heb gisteren een bloedtransfuctie gekrgen en ik heb ook gisteren bloedplaatjes gekregen ik moest gisteren om 10 uur naar het ziekenhuis in einhoven daar kreeg ik me bloedtransfuctie en dan kreeg ik ook nog blodplaatjes dus we kwamen daar giseren is het bloed er nog niet dus ik moet nog  2 uur wachten de bloedplaatjes zijn er al wel die kunnen er al aan even later hangen de bloedplaatjes er aan en het is al 12 uur dus het bloed is er dus ze komen met de naald om de portokat aan te prikken het is gedaan ik krijg twee bloedzakken om meer energie te krijgen en elke bloedzak doet er 2 uur en een halve.

BTW

Remind me that I have to become a blood donor. I hate needles, but that's no excuse.

Thank you, whoever donated the blood that Kay's now getting.

Trip back in time

Guess where we are? Back where this all started. To be specific, we're back in the very same room where Kay was initially treated for leukemia the first time. She's getting a blood transfusion at the Catherina Hospital in Eindhoven, something that takes most of the day. So we're sat here, chatting to staff who remember us from the first time. Another strange experience.

Anyway, by way of tripping back in time, here are a few photos of her last stay in the Catherina:

11th June 2002, her first full day in this room.

4th July 2002, day after Natasha's birth.

The cheerful Dexa Kid.

End of induction therapy.

Message from Kay

ik voel me al veel beter ik heb maandag me tweede chemo-kuur gekregen een rugeprik en via mijn portokat ik ben nu thuis ik heb ook een sonde gekregen voor mijn medecijnen en ik krijg s'nachts krijg ik sonde voeding binnen dan heb ik wat eten binnen ik heb twee keer mijn sonde uitgespuugd ze hebben hem er ook terug in moeten zetten wat niet fijn is ik ga als ik me weer beter voel en ik kan weer naar school dan ga ik een spreekbeurt over leukemie doen.

ik voel me aan de ene kant goed maar aan de andere kant voel me ook niet goed de goeie kant is dat het goed gaat met de medecijnen en dat ik weer thuis ben en de niet zo goeie kant is omdat ik bang ben dat er iets mis thuis gaat maar verder voel ik me goed ik eet goed toen ik in het ziekenhuis lag was ik onzettend zwakjes ik lag alleen maar in bed ik kon bijna niks daarna ging het wat beter maar ook niet jeeeee super goed en zondag had ik goed gegeten en s'avonds ga ik naar bed en ik gooi me kleren uit ik ga op me bed zitten en ik ga weer staan en ik begin de spuugen raar raar raar wat gebeurt er ik spuug de sonde uit ik roept heel hard naar beneden naar papa en mama daddy komt naar boven en ziet wat er is gebeurt hij haalt de sonde weg daarna ga ik bij papa en mama in bed liggen een uurtje later komt de thuiszorg zet hem er weer ik ga weer lekker slapen rond 11 uur s'avonds heb ik ontzettende maagpijn mama belt de thiuszorg en vraagt of de sonde goed zit hij zat goed yes dat is fijn maar dan wat dan gaan papa en mama ook naar bed dan weet papa het en zegt dat ik van het spuugen een spier het verrekt dus dat was het maar mama dacht dat er ook een beetje lucht in mijn maag had zitten en dat was het ook dus er was een spier verrekt en er zat lucht in mijn maag.

dankje wel voor alle berichten bloemen kaarten cadootjes en nog veel mee.

xxxxxxxxxxxx kay