T+78: Coca Cola It's the Real Thing

The heat of the last days plus general tiredness has discouraged me from updating the blog. This morning I settled down with my laptop to write an update only to discover that its 3G hardware seems to have failed. This update is coming via my iPad, but the browser doesn't support the full range of formatting available in the blog. Anyway...

Kay's blood counts rose again according to Friday's figures, up to 0.7. So it does seem that we have rounded a corner. The last CMV count was not greatly changed but no-one seems to bothered by that. In fact the medics have begun to talk about the possibility of Kay going home, everyone feels that Kay's condition will improve greatly if she's at home. The notional date for her going home is 19th July, which would make the best possible birthday present for Marion. But there's a lot of ground to cover first: her medical situation needs to be stable and provision needs to be made for her to get intravenous medication at home, at least twice per day. This is complex and I'm also left wondering about how it will be funded.

As mentioned before, Kay's biggest problem no longer seems to be medical but the fact that we have been unable to get enough calories into her. I had a long chat with the Dietician on Thursday and we agreed to change Kay onto a different type of liquid feed and to setup a more systematic way of experimenting with flow rates, concentrations and timing. Marion started with this on Thursday evening, but more or less immediately Kay was very sick. My feeling was that it was unlikely to be related to the new food since she'd only been on it for a short while. But the sickness continued through Friday (evening).

As agreed, Marion had kept the flow rate low and had built in pauses, but still the problem continued. Both of us started to feel a little desperate, it seemed as if this new food was worse than the old one. Yesterday Marion was chatting with one of more experienced nurses here who suggested that giving Kay Coca Cola might help. Apparently this is common practice in the Rotterdam children's hospital. Since at that moment Kay was feeling sick, Marion gave her 30ml fresh Coke via the NG tube. Ten minutes later, miracle of miracles, Kay was feeling better, no problem with her tummy.

Later that evening Kay started complaining of feeling sick again, as usual. So I ran 20ml of Coke into her, again via the NG tube. Within 30mins the sickness had again passed. Now we're left wondering if this really could be a big breakthrough. (Just think how much all those things that we're so used to thinking about as unhealthy, like McDonalds and Coca Cola, have contributed to Kay's progress here. One of the Nurses told me last week that McDs is the only takeaway food that the department will allow the chemo-kids because McDs is the only company that will guarantee that the food is fresh enough and that the oil clean enough for the food to be served to immune-compromised children. So don't believe everything you hear about McDonalds, this company has my deepest respect).

But before we all go off halfcocked claiming that Coke is a wonder product, we have to remember that the feed has been changed and that the dosage of the anti-rejection drug (nasty drug) is also slowly being reduced and that the Coke trick has only worked twice. But that said there does seem to be a cause-and-effect relationship at work and we're curious to keep on trying it.

Perhaps the biggest change in the last few days is in Kay herself. Following a long talk with the child psychologist her attitude has change by 180 degrees. The "anti-attitude" has largely vanished and instead she is thinking and acting in a positive way. She's still sleeping at lot, but when awake she's looking for things to do, attempting to eat a little, even smiling. Yesterday evening we had a good Thunderstorm pass by and Kay sat with Lauren & I on the spare bed watching the storm. Her feeling of sickness had passed following the Coke solution and she didn't feel tired, so she sat with us till late watching the lightshow. The psychologist had identified that Kay was feeling isolated from the outside world, so a program of (re)building contact with school and her friends is being put in place. There's no reason that she cannot have visitors, so you're all very welcome (though not at the same time!)

In great need of exercise, yesterday I cycled a 90km loop from our house towards Venlo, then along the Maas for 10km and then back home. When I started around 9am it was 28C, when I finished the air temperature measured on my bike was 38C. Unbelievably hot! The only way to stay cool was to keep moving forward, if I stopped at a traffic light I started to melt. I drank at least 2 litres during the ride and had to drink another two bottles of a rehydration drink when I got home. Jumping into the pool when I got home was a very pleasant moment, to say the least. Maybe t was a bit crazy to do such a long ride in this weather but after the last weeks I really needed to clear my system out and stretch myself a bit.

Tonight Holland goes mad. I'll be at home with Nattie and Lauren, Marion will be here. Kay has been given permission watch on the big screen projection in the children theatre. I think that this permission is more important to Marion though. I wonder what state the country will be in tomorrow?