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.