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...