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.