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.