Tough Kid

The last few days have been busy. Working, plus sharing in Kay's care, plus the normal family stuff. I keep thinking that Kay's care doesn't really amount to much, just make sure her meds go down, that she's fed and that she gets lots of cuddles. Sounds all so simple, nothing high tech or risky or that requires a massive amount of thinking or physical effort. But for some reason that I haven't yet put my finger on Kay's care takes all of our energy.

Tuesday evening she threw up her feeding tube, before she'd had her meds. Thus we had to wait for the HomeHelp to refit the tube. Then we could give her her meds and then her feed. Because of her weight loss, we're now putting 1 litre per night into her, which is two packets of food. On Tuesday I was less tired than Marion so I stayed up to hang the second package. Got to bed at 1.30am. In theory no problem. But yesterday I was practically drunk the whole day from fatigue. I went to bed early, leaving the late feed to Marion. But I woke at 2.30am and was then awake for a long time. Got out of bed three times to Kay, once because I thought I heard her call, once because she did call and needed a pee and once because the feed pump gave an alarm and needed sorting.

Today Kay gets a blood transfusion. We needed to be at the hospital (Eindhoven, luckily) by 10am, so there was no hanging around in bed. First meds, then prepare for a day at the hospital, etc. At the moment my battery is completely flat. I can feel that I'm at the edge of my endurance, so I plan to take it easy for the next few days - at least in theory. There's no room in all of this for a sick parent. I have to say though that I'm worried about next week: it's a heavy chemo week and we'll be without help at home - Marion's wonderful Aunt & Uncle who have been living in our house for the last two weeks will be on holiday. We'll have to see how that goes.

I have to say that I'm so impressed with the way that Kay is dealing with everything. She's a damned tough kid. Her weakness is removing plasters, that's something that she hates and kicks up a fuss about. However her social-emotional intelligence, if one calls it that, is amazing. She just sat here and had a long chat with one of the child social workers, telling her everything about how she feels and about her worries, etc. Mentally, I'm convinced that she's dealing with the situation incredibly well. I wish I felt that I was doing as well.

She's now getting the blood, which will take a few hours. So we're planning some quiet time for the rest of the afternoon.

BTW, the Slingbox is brilliant. We sat here this morning watching Sky from home on my laptop - amazing.

This evening...

...as we were putting Kay to bed she said to Marion, "Mama, I want to talk to you about something tomorrow." Marion says, "What do you want to talk about?". Kay, "About dying at home".

I can barely see the screen through my tears.

Light at the end of the tunnel is the next train coming...

Over dinner this evening Marion put her finger on one of my/our base feelings: the sense of unfairness that this kind of thing has to happen to us, again. It started for me with divorce and since then life seems to have been one long story of tunnels, lights and trains. A few weeks ago I had an errant thought: could it be that after all these years we could emerge from the tunnel into light?

It certainly seems that things are starting to go well with the last tunnel: Verum. After six years of hard work it is likely that Verum will shortly be able to sustain itself. Beyond that the growth curves look good. And now this, the light of a cash-flow positive business turns out to be the next leukemia train coming. We're going to remain in the tunnel for at least the next two years, if we're lucky. There are people who live their lives without tunnels, lights or trains. How come? And when will we have earned the right to join this elite and fortunate group?

Emotions

Marion remarked that my blog is rather too factual. She says that her emails are written from the heart, that once written she doesn't re-read them and that writing them represents a kind of emotional release for her. She's encouraging me to do the same thing. However my emotions are such a raging torrent that I'm not sure that I can even begin to put them down in words and if I did I think the result would be enough to have me locked away in a padded cell for time eternal. Plus, along the way I'm sure that I would bruise a lot of people's feelings, specifically in the area of God/non-God. But you can be sure that I'm going to be re-reading Dawkins when I get out of here.

I'm angry. That's for sure. (Reminds me of Richard Gere in the film "Pretty Woman"). I'm also extremely frustrated. Partially because there's no-one/nothing to vent my anger at. Occams Razor dictates that this situation is just bad luck and there's nothing to blame except for the faceless winds of fate. But still, the desire to rail against someone or something is overwhelming, almost enough to make it worthing believing in a deity and then blaming them. I can understand how religions get founded.

I'm scared. Unsurprising. What is surprising is that I'm more scared than last time. My explanation for this is that last time Kay was a baby. This time she's a full blown unique person who has carved out her place in our lives. Last time I was worried about losing the 'potential' of Kay, if you like. This time I'm worried about losing the actuality. And here I run out of words, I leave it to your imagination.

I'm worried. Last time was was very hard on the family and on Marion & I in particular. Our relationship hasn't recovered from the last time, when it was tested to the max. And this time the situation is more complex. Last time were sitting on a pile of money and had no other critical obligations. This time we have Verum to deal with as well. Will we be able to deal with everything that will come our way without tearing each other to bits in the process?

And this is all just the tip of the iceberg. As I read it back, I realize that I've not really done what Marion said, this is still a collection of facts and not really how I feel. But I can't actually begin to describe how I feel and I don't want to, it would be like kicking Mount Vesuvius.

So, do I feel better for having written this? No, not really. I'm kind of aware of the landscape of my feelings anyway, which is all that I've described here. Writing it down has brought the landscape slightly better into focus, but that's all. I'll have to think about whether to post this entry. Who wants to read this stuff anyway?

Mixed feelings

It's great that Kay will be able to come so soon. I hope that the dramatic drop in her white cell count bodes well for the future. But of course this question belongs in that forbidden zone of questions-that-relate-to-survival-chances. These are questions that patients/parents want to, but shouldn't, ask and Doctors don't want to answer because they actually have no meaning.

Last time that Kay was sick her type of leukemia had a cure rate of 85% and for the last 5 years we have smilingly believed that we were a member of the 85% club. How wrong we were, apparently. So practically speaking the answer to all survival questions is digital: you're cured or you're not. But even if you are, maybe you're not. And if you're not, you definitely aren't. So don't bother asking, the answer is not useful.

Going home so quickly worries me. We've barely got our heads around the idea that we have a seriously sick child in hospital before we have to get used to the idea that we'll have a seriously sick child at home. Of course there are very many advantages to being at home, but I'm very worried about how Marion and I will cope with being not only being employees and very worried parents, but also practically full time nurses and drivers. I haven't thought it through yet, mostly because I'm so tired that I can barely remember my own name, but I have no idea what having Kay at home will imply for us. Will it actually make life easier? Or what? I guess that we'll have to wait and see.

Complaint - 3G Internet

In normal life I use my KPN mobile internet connection infrequently. But when I have used it, I had the feeling that the practical available bandwidth was rubbish.

The last days I've been using it intensively. In theory my subscription & hardware will support 7 mbps. However, the maximum that I've seen is about 1 - 1.2 mbps and that only in bursts. The problem I suppose is signal strength, I've yet to find any location where I get more than about 2 bars of signal.

My conclusion is that in all practical circumstances 3G internet is useless for anything except email and the odd small file transfer. Bring on WiMax, I say.

Wonderful things you'd rather not know about

I have to say that the Radbout hospital is brilliant. The staff are super, friendly, professional, kind and caring. The department is obviously well organized and well run. Everything is neat and well cared for. Considering that we're in a hospital, we're quite comfortable - none of the heat that we had last time.

Not only that, effectively we have walked straight in off the street and in no time at all we're are the recipients of some of the most technically sophisticated medicine around given by leading experts. I couldn't imagine being more fortunate under the circumstances.

We also have a room in the local Ronald McDonald house. I have to say that I'm completely stunned by the quality of this accomodation, it's around the four - five star level. Again, staffed by friendly volunteers. I guess that if one has to live a disaster one might as well do it comfortably.

Waiting to wake up

The India trip was intense. Leon & I were working flat out for a week and then got on the flight home last Monday night. I don't sleep well on planes, so inspite of being tired and it being 1am when the flight left, I took a sleeping tablet. Obviously I over did it and I've fallen rather too deeply asleep. Everything certainly does have that glassy unreal look about it and nothing makes any kind of sense. I hope that I'll wake up soon, the flight back from India isn't that long. But then I read somewhere that even long dreams occupy very little real time. So I guess that it could go on for a while. Still, I have the satisfaction of knowing that when I do wake up everything will be back to normal and the stewardess will be handing out those kinda half-warm wet towels and serving omelette that was cooked in the last centuary. Or was it half warm omelettes and wet towels that were cooked in the last centuary? I don't know, nothing makes sense in dreams...

The end of another day

The last days have been tough. I don't intend to air my emotions in a blog- I'm sure they would scare you off reading anything else I may write. But without plumming the depths, I can say that so far Friday was my worst day. Taking Kay into the operating theatre and talking her into sleep was an experience that I had on day two the first time around and swore blind I'd never do again. Never say never - I did the same thing on Friday and it was worse, took me to the edge of reason.

I have the feeling that of us all, Kay is dealing with it best. This evening I had a long talk with Natasha on the way back from the hospital and asked her how she feels. Her answer was that she doesn't feel anything so far. But she's very observant and is beginning to understand what is going on. I'll talk to Lauren when she gets home this week.

My impression is that Marion is dealing with it better than I am. She is very emotional and openly so, except when she is with Kay. In a sense I feel that Marion's ability to give rein to her emotions, even to a limited extent, is a sign that she's coming to terms with them.

I dare not give my emotions a millimetre of freedom. They're raging so strongly that, like a dam, the smallest leak is likely to result in a catastrophic flood. So I'm doing what I normally do in these circumstances, locking the emotions down, dealing with the reality and facts of the situation, and waiting until I'm calmer and more able to deal with how I feel. So please, if you think that I'm being distant or cool, understand that this is not because I don't feel any emotions but rather the exact opposite: my emotions are so strong that they would incapacitate me if given rein and this I cannot allow right now. There are a lot of people depending on me to carry on functioning.

More thanks...

This time to Armin van Buuren and Faithless for my high energy workout on the cross trainer this afternoon. Both speakers are still trembling and the cross trainer is wondering what hit it. Only got in 35 mins before having to move on, but it has helped me feel a bit better. Could do with some kind of marathon session or a long bike ride or beating up on my MTB for a couple of hours.

I don't know what I'd do without a ready supply of music right now. iPhone rules again.

Weird freedom

The hospital requires us to remove our (wedding) rings for hygene reasons. I'll have to remember that excuse in future: "you're back late, aren't you? And where's your ring?". "Er, oh yes, er, yeh, I had to take it off for hygene reasons, dear".

Techno Family Howe (The Rise of the iPod/iPhone)

Things have certainly changed technologically since the last time we were confined to an isolation room. I had to use a phone line to get an internet connection and nobody had heard of an iPod/iPhone.

Now we're camping in a room of 3x4 metres with three laptops, two iPhones and an iPod touch. No shortage of communication media, then. Kay is currently plugged into her (new) iPod touch, which I have packed with 22GB of music and films, namely the entire "Lord of the Rings" trilogy.

I have recently opened a Facebook account so I can keep in touch with Lauren and other far flung folk. Now I have added Windows Live Messenger, since only the older folks seem to rely on Skype. And of course we also have our Blogspot. Keeping track of all this is going to become a nightmare, I suppose. This leads me to wonder if there's not a business case for a meta-website that organizes all the information spread across the others. However, to be honest I don't know what the business case is for any of the mentioned sites anyway - how can people make money out of all this free stuff?

For some time I've been looking for a reason to buy a Slingbox. The idea of being able to stream Sky HD to my iPhone or Laptop wherever I am sounds great. But frankly, "wherever I am" is mostly at home - at least when I have time to watch TV, so not much point in a Slingbox. But being confined to an isolation room has given enough reason, so I've ordered a Slingbox Pro from Amazon. Playing with a new gadget is always a useful distraction from daily matters, so I'm looking forward to setting it up and trying it out. You can imagine that Kay & I will be sitting here watching mid-afternoon reruns of "Midsomer Murders" or "Tom & Jerry" by the middle of the week. Great! (if it works).

Last time Kay was sick, digital cameras had only just started to become reasonably good. We have loads of film photos of her from that period, but I bought a decent digital camera back then and so the photos that we look at are all the digital ones - can't remember ever having seen the film ones. Now of course we have the cameras in two iPhones, my Canon 50D, Marion's Canon G6 and Kay's Canon something or other. So you can expect to be buried in photos and low grade iPhone video. If I feel as though we don't have enough consumer technology here, I'll bring in my HD video camera!

Rob.

Sleep and Tiesto

I have to thank Tiesto for the album "Just Be". I have listened to it over and again during the last days, especially when trying to relax or get to sleep. On Thursday night, struggling to find peace of mind I put "Just Be" on and allowed myself to enveloped in this beautiful music. In no time at all I drifted away to sleep...

Daddy's View

Welcome to Kay's Daddy's leukemia blog. I'll use this for posting my view of Kay's treatment.