Things they don’t tell you

Woutertjie is 9.  He is fabulous, cheeky, naughty, gets on his sister’s nerves, prefers meat above all other food groups and adores anything that happens on a screen. He has exceptional empathy with anyone who suffers.

Woutertjie is an oddity in the world of paediatric cancer.

Firstly, he survived having stage 4 rhabdomyosarcoma (staging indicates how advanced the cancer is – 1 means it is only in the original spot, 2 and 3 means it has started moving and 4 means that it has moved to “distant tissues”; 4 is very very bad).

Secondly, he is in remission from rhabdo for longer than 5 years already, making him, in the words of his oncologist, cured.  Rhabdo has this filthy way of coming back after a couple of months or years of remission.  Hitting 5 years of remission is major.

Thirdly, he is in the “correct” school grade for his age. Usually, because of the treatment and the side-effects, children either start school late or has to drop out of a grade halfway through and then repeat it.

Until April 2013 I was happily under the impression that Fourthly, he had no lasting effects of the cancer or the treatment.

Then we went for an ECHO (heart testing) as part of his follow-up checks and found out that he has a “below normal ejection fraction and a persistent sinus tachycardia, which could represent a compensatory mechanism for the lower than normal EF”. In other words, his heart doesn’t pump as efficiently as it should and is now pumping faster to make up for it.

I was shocked.

We knew that he got tired a lot faster than other children, but we thought that he was simply unfit. Hearing that it was more than that really threw me for a loop. But all things considered, he was doing well.  He is alive.  Alive = Doing Well

We went for his yearly follow-up at the cardiologist earlier this month. His pulse is still too high and his heart is still not working at optimal capacity. But. And it is a Big But. Aside from that, his heart is looking good.  Considering that there was a cancerous tumour growing through the heart muscle (at the “join” where the IVC (inferior vena cava, the large vein that carries blood back from the body to the heart) enters the right atrium) he is doing exceptionally well.  The cardiologist first saw him in hospital, 5 days after diagnosis. She saw him again the day before we started chemo.  When we went for a check-up at 1 year in remission, she told me that she was very surprised to see that he survived.  Never mind the rest of the cancer, simply his heart issues at the time of diagnosis was enough to have killed him.

So here we are.  Boeta has started taking a low dose of beta-blockers  to slow his heart down a bit. The idea is that the heart will then be able to pump more efficiently. He is participating in school sport, but the teachers know that he shouldn’t be pushed beyond his ability.

Who knew that the tail-end of a cancer diagnosis would drag on for so long?  BC (before cancer), when I was young and naive, I thought remission was the end of the story.  Then life would restart and everything went back to normal. Ha. Not quite.

But we have a healthy child who is blossoming into a wonderful person.

What more could we possibly ask for?

Advertisements

Happy birthday, Baby!

There are many things that I regret.  Things I didn’t do, things I did in fact do, things I should have done.  Same goes for things said, not said, should have said.

There is one thing that I don’t regret though.  I married a good man.  The best. And he (generally) makes me want to be a better person.*

Yesterday Wouter turned 40.  After spending a very busy weekend celebrating with family and friends in Montagu, we spent the day quietly.  Mostly because Wouter had business meetings until very late. So today I sent cupcakes to his office (actually I delivered them myself – it is handy to work on the same campus, 100m from each other) and I spent yet another day thinking about what I did right when I married him.

I did goooood.

Wout

 

Wout at ~1 year old.  No wonder our children are so shockingly good looking.

 

 

 

 

 

 

 

 

Untitled

 

The cupcakes.  With ribbons and all.  And the ribbon is in a dull colour, the way Wout likes it.  I didn’t say he was PERFECT, did I?

I, however, am the perfect wife.  Obviously.

 

 

 

 

 

*Sometimes he makes me want to be a better shot, but that is a story for another day….. 😉

Squeaky toys

Why, oh why, are the best toys that ones that make the most noise?  And not just the most, but also the most irritating.

Years ago I bought “wagons” for the children.  It is a plastic basin on wheels, with a pull string on one side and they love it.  But after years of abuse the wagons have started squeaking.  And since Woutertjie is much more in love with his wagon than Carien is with hers, his is squeaking more.  Unfortunately, this is coinciding with a dramatic upswing in his love for and devotion to his wagon.

This child literally doesn’t walk if he could rather sit in the wagon and hitch himself along. He ate supper tonight sitting in his wagon.  All the while jiggling it this way and that, making it squeak and squeak and squeak.

He is loving every moment and I am ready to use the wagon as a litter box for the cat.  Who would probably make even more noise with it, come to think about it.

But look at that face.

I am such a sucker.

The wagon is safe.

For now…

 

 

 

Dear Cat

I am NOT sympathetic.  I know you think that it was all my fault because you are, indeed, a cat, but no.  This time you are NOT pinning it on me.

Do you remember that night earlier in the week?  The night that you woke me up?  Don’t try to deny it.  You know you do.

It was around midnight, we were all asleep and you started crying you heart out.

No.  Stop right there. It wasn’t singing.  It was crying. I have two children.  I know what a tantrum cry sounds like.

So there we were, midnight, me formerly asleep, the rest of the family still asleep, and you hitting the high notes.  At the foot of my bed.

Remember how I first begged you to keep quiet?  Nicely?

And do you remember how you continued lamenting at full volume?

Do you remember that I became so concerned about your well-being that I got up and turned on the lights to make sure that you weren’t injured?  After all, we do have some rough characters in the neighbourhood.  That black and white “friend” of yours that you keep inviting into our house for fights is bad business.  I always said so, but did you listen?

OK, OK, we can talk about him later.  But you know what they say about girls who are seen around with tomcats like that one…..

Yes.  Later.

So do you remember how I got up?  And found you?

And do you remember how upset I was when I found out that you were tantruming because dead mice don’t play anymore? Even when you slap them only lightly like <so> or sing at them like <♫♪♪> they still don’t want to play after YOU, dear Cat, killed them.

And do you remember that I had to then get rid of the very much dead mouse by myself, since Wouter was asleep? I threw it out of the window and you went after it.  And I thought you were going to do whatever you do with dead mice  –  o u t s i d e.

Now. Remember all of that?

Good.

Because today the children brought the laundry to the kitchen and put it in the washing machine.  I was so proud of them for actually doing something I asked them. They collected all the dirty clothes from the laundry basket – by themselves – and even sort of sorted.

I was so proud.

Life was good.

Until I removed the last of the laundry from the machine.  The underwear, the socks, the little bits that I scooped up without looking at it because it is an industrial sized top loader machine and I have to hang half into it to reach the bottom.  And then I grabbed up the very last sock (very small – I can’t remember the children having grey socks) and guess what?  It wasn’t a sock.

It was a dead mouse that you, Ms Cat, decided to put in safe storage.  In my full laundry basket. Probably that very same mouse that you retrieved in the vain hope that it might somehow come back to life if it could just have a little rest on a nice soft pile of clothes. The clothes that the children bundled together without looking at what they were bundling.

Dear Cat.  I do NOT appreciate a hand full of dead mouse.

And yes, I flung it.  Quite far indeed.

And yes, I did the Woman Finds Mouse ballet.

And yes, I took a step backward during my dance.

And yes, I stepped onto you food bowl and the Friskies went flying.

Everywhere.

And now you have to hunt (pardon me for snickering) around the kitchen for your supper.

I’m not feeling your pain. You brought it on yourself. Now deal with it.

And make sure you get the piece of Friskies over there.

And there.

The least you can do is clean up where you made me spill.