T+55: Kay

In all this blogging I don't seem to have written very much about Kay herself, only about her medical state. So I'll try and correct that to an extent.

The first thing worth remarking is that Kay's eyebrows and hair are starting to grow back, BUT THEY ARE BLACK! Oh, oh, that's going to be a big problem if it continues! Kay already remarked that if her hair remains black she's going to dye it. But at the moment she's more of a mind to shave it off.

Just looking at Kay lying in bed it's difficult to see that there's much wrong with her, apart from her bald head. Her colour is good and she doesn't look sick. I suppose that the dead give-away is the monitor leads, the NG tube and the oxygen line. That and the fact that her hands tremble slightly when she uses them. But she doesn't have a fever, she's not coughing, she really has no other externally observable symptoms.

She has lost a lot of weight and that can been seen from her legs and arms which are very thin but not skeletally so. She is very weak and just getting out of bed is hard work. It's fairly heartbreaking if one allows oneself to think about it, the hockey player is nowhere in sight. It just occurred to me that maybe she could use the poster that I made for her BMT stay right now, with all the pictures of hockey, tennis and riding. A reminder of what she can achieve again in the near future.

Kay's skin is extremely sensitive, borderline painful at the moment. Washing her or drying her after a bath has to be done carefully to avoid causing her pain. She says that she can barely tolerate toothpaste because it tingles far too much in her mouth. Apparently this is a typical side effect of radiotherapy.

I estimate that she's sleeping around 20 hours per day, but a little less each day. She's gone from not showing any interest in what's going on around her to watching a bit of TV or playing a game with me or on her computer. But she soon tires and drops off again. It's difficult to get her interested in anything. For instance I suggested this morning that we could go outside for five minutes on to the lovely play terrace that they have here and enjoy a bit of sun and fresh air. She was not interested, too tired she said.

This is not the Kay we know. Marion & I have just had a chat with the child psychologist, who talked to Kay this morning. She assures us that Kay is fine and that her disinterest and "flat" mental attitude are entirely normal for a child in her situation. She said that Kay is fully aware that she is recovering slowly from a 'flu virus and that she accepts that she's tired and knows that it's all a consequence of the infection. Specifically there's no question that Kay has "given up" or that she's even worried about her current state. She's just given herself over to the necessity of getting through the current phase and knows that there's not much she can do to accelerate the process. When put like that it almost sounds as though Kay has a better grip on the situation than Marion or I.

Another improvement is that Kay has started to smile again. In the last days and weeks a smile has been hard to find. Yesterday evening some of the nurses staged an arm-wrestling challenge in Kay's room. Dave versus Mieke. Mieke secretly gave Kay a large syringe full of water so that, at the critical moment, Kay could soak Dave and give Mieke the edge. Unfortunately Dave turned out to be fairly waterproof and won easily. He then challenged Daddy to a round. Daddy has always been pretty useless at arm wrestling, but yeh, why not? So Dave & Daddy went head-to-head. Dave very politely made it look like an even competition for a minute or so and then wiped Daddy out too. Kay thought that this was all hilarious and sunshine filled the room. Today, smiles are easier to come by, and even the odd hug here and there.

So Kay is getting better, very slowly. Marion & I just have to be patient and live with the uncertainty for a little longer.