Kay's Leukemia Blog: T+4: Bohemian Normality

Marion & I went out for dinner last night! How daring of us, don't you think? There was a kind of naughty thrill about it, like sneaking out of class. We had an excellent meal, we chatted and I'm sure to most observers we must have appeared to be just like normal people, nonchalantly enjoying an evening out. Amazing! In fact probably the only way to tell that we're actually from Planet Leukemia would have been to listen in to our conversation, which by now is about topics and is conducted in a language that (fortuately) most people don't understand. When we got in a taxi to go back to the hospital it felt wrong to be sitting in a comfortable car, like being chauffered in a limo to an appointment with the Electric Chair. It should have been a Black Maria and the SGP (= Special Patrol Group, a UK police unit that got disbanded in the 80's for being too violent) and I should have "resisted arrest". But no, we returned to our world voluntarily and not without a small sigh of relief: the real world feels rather too unreal and not a little intimidating at the moment.

As you can conclude, Kay had another good day yesterday. Monday's decision not to give her platelets was revised because this morning she had elevated blood pressure. The combination of extremely low clotting factor and high BP is seen as a risk not worth taking. Fortunately. Kay skipped the webchair this morning because there were too many things going on around her and she felt overloaded. But in the afternoon she carried on her division lesson with Juff Jonja and then fell asleep before the physiotherapist arrived, thus missing her physio session.

I should mention that the physio sessions are great and (can) make use of modern technology, like the Wii and the Wii's balance board. But simpler things are also done. Last time the physio suspended a balloon on a tether from the ceiling and played balloon badminton with Kay. Brilliant! (I wanted to join in!).

We had to wake Kay up in the early evening to eat and shower, etc. This is always a dangerous thing to do with Kay. When she wakes up on her own she's mostly bright and shiny, but wake her up before she's ready and one risks losing one's arm above the wrist. Marion was the one who woke her up and was promptly savaged to the extent that she had to leave the room before Kay would consider calming down. Kay retreated to an improvised lair behind the (folded up) parent bed in the corner of the room, where she continued to growl at Laura, who was trying to calm her down.

I guess that the reason that children have two parents is that when one is persona non grata the other still has a chance to rescue the situation and so I managed to coax her out of her lair, gave her a cuddle and a talking too: "What are you looking forward to eating this evening? Olives? And who was it who went to the trouble of getting olives specially for you? Yeh, Mama. Think about that for a minute...". (I didn't reckon that the situation was quite bad enough to use the Mickey card).

Surprisingly Kay didn't protest about our plans to eat out. She just required that we set her up with a bunch of House DVDs and when we got back around 10.30 she was still watching House: "Ha Daddy, you have to catch up with three episodes!". So I have my homework to do today. There are worse things.