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?

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

 

 

 

 

 

 

 

 

 

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.

School

My baby is now in big school. How did that happen? And when did she become so independent and school-ready? Carien is 6 (August baby) but is more ready for this day than Boeta is (at 8 and going to Grade 3).

Carien was up at sparrow’s fart this morning, getting dressed and ready. She absolutely loved putting on her brand new school uniform. I wonder how long it will take her to realise that big school also means no princess dresses, sparkly jewelry, cutex or pink anything. It won’t go down well.

I crawled out of bed a bit slower – someone had to mark stationary and cover books until very late (or early, depending on your point of view). And I can tell you that it wasn’t Wouter…. In his defense, he did make me tea. And if you know me, you know that a cup of tea will take you a long way in my opinion.

Either way. Here are some pics of the day.

At my mom’s house on our way to school.  Boeta is firmly in Hand Gesture Stage.

One of the few pics where Boeta’s hands are “normal” or normalish at least!  This was in front of Carien’s new classroom, just before assembly.  (Carien 6yo, Grade 1 and Boeta 8yo, Grade 3)

Blurry, but there she is in the row of Grade 1s.  Please note her daintily folded hands!

In her new classroom.  And yes, she sits right and the back and she is very impressed with the view!

Woutertjie in his new classroom.  Doesn’t he have the most beautiful stationary container?  Self-made, I will let you know.

Well, now we wait and see what they have to say.  Today is my last day of leave, so I am picking them up after school.  And from tomorrow my mom is back on duty.  I really really want to be a SAHM and pick up my own children.   <—-  I never ever thought I would say that.  In my whole life.  Ever.  But it is true.

More “5 year” events

Since the “5 years from diagnosis” post we also had

5 years from meeting our oncologist

5 years from hearing that the tumour was actually inside Boeta’s heart (apparently it said so on the first scan, but we were too shell shocked to interpret the medical-speak)

5 years from first chemo

5 years from starting hair loss

5 years from having his Broviac put in, and Wouter being told that Boeta “won’t survive the surgery, but that is OK since he won’t survive the cancer either”.  Ha.  Take that, unbelieving doctor!  That same doctor removed his Broviac in 2010 and told me that he was very grateful to have been proven wrong.  I am too.

In a couple of weeks we are celebrating 5 years since Boeta’s first clear scan.  In a way it feels like his re-birthday to me.  He was born on 5 April 2005, but on 16 March 2009 he was reborn to us.  We are blessed.

5 years

It is Christmas Eve, we are at my mom’s house and it is 5 years since Woutertjie was diagnosed.  Every year Wouter and I look at each other in the days and weeks running up to Christmas and can only be amazed at how far we’ve come.  God has been gracious and kind to us and for that we are eternally grateful.

This year Boeta seems a lot more at ease with us talking about “the time when he was ill”.  I think he is starting to realise that talking about it won’t make it come back.

Carien only cares about going to big school next year.  We already bought her school shoes (white sneakers) and she has been wearing them everywhere.  She is definitely ready for school.

And we are ready to celebrate Christmas and the birth of Christ.  May you have a blessed 2014!

Outing time

It is that time of year.  School outing time.

I used to get very upset at my dad, being so overprotective and old-fashioned and uncool.  He made such a fuss before he allowed us to drive with anyone other than a certain select group of people.  Which means that I missed out on more than one weekend away / camping trip / whatever when I was still in school.  I decided that I would never be as boring as my parents.

Now here I am.  Last week Carien’s school went to the museum in Cape Town.  I made specific arrangements with another school-mother (who is on my select list of drivers) to take her and bring her back.  We practiced scenarios (Are you going to fasten your seat belt? The other children are laughing at you – are you going to unbuckle the seat belt?  Everyone else is riding loose in the boot of the car – are you going to join them?) until she told me to “please stop now”.  And I stressed that whole day, even after I got the message that she was safely back at my mom’s house.

Boeta’s class went to Giraffe House yesterday.  And again we did scenarios.  And again I was restless until he got back.

I can’t help but be amazed at how I am turning into my parents.  And now that I am a parent myself there is no way that I would allow my children to do the things that I wanted to do so badly when I was in school.

How the mighty are falling…

Faith like a child

I am falling more and more in love with my children.  They are priceless and adorable and independent and dependent and very grown up and so small, all in one body.  Which doesn’t mean that they can’t get on my last nerve at times.  We (I) aren’t that perfect.

Today Wouter and the children drove to Pringlebay to his parents to deliver their trailer.  It has been raining like mad since yesterday and since there were reports of road closures in the Somerset West area Wouter phoned the SWest police to confirm that all the roads were open and that they would be able to get through.

I was barely done with the second chapter of the proofreading that I stayed behind for when Wout phoned to say that Clarens Drive, the only road around the mountain from our side, is flooded.  And he knew that because they were stuck in the resultant traffic jam.  Eventually they managed to turn around and come back home.  MIL had so much food prepared for their visit and then they couldn’t show.

When they got back Wouter told me that, while they were stuck in the traffic jam and waiting to find a spot to turn a Vito and a trailer around, he could sense Carien getting more and more quiet.  When he looked back at her, she was quiet as a mouse, but with tears running down her face.  She was so scared.  I never realised that they’ve never been close to flooding before.

Apparently, when Wouter got out to talk to someone, Carien turned to Boeta and told him that she thought it was time to start praying.  My baby.  My poor, frightened baby.  She told me that she felt much better afterwards, because she prayed that the sun would shine again (Noah-connotations, maybe?) and then the sun did shine for a little while and then it rained again.  But she felt better anyway.

Boeta hasn’t said anything about the trip.  Which means that he was very disconcerted by it and will probably mention it about 3 months from now, when he has chewed it over for long enough.

Sometimes I can’t believe that those two children were born to the same parents and raised in the same family.  Their stress-handling methods are so totally different. And so totally unique.

I think we’ll keep them for a while longer.

Men and boys

Last night Wouter had lots to say about my lack of humblicity humility.  <— dankie Tif!

Which leads one (me) to the conclusion that he thinks he is equally awesome.  It isn’t fair to criticise someone if you can’t do better, right?  Huh.

My awesome husband and his equally awesome son (please note how deftly I shift all blame to the mentioned husband) caused me to oversleep this morning.  In fact, by the time I woke up it was time to leave for work.

Backgroud:

Our usual routine is quite complicated.  My iPhone alarms at 06:30.  Boeta then takes it to go and play games until 06:40, when the phone alarm goes off again.  He brings it to me, still screeching, and I wake up and get up and everyone gets ready for work / school.  The children need to be on their way to school by 07:30.  If Wouter takes them I go to my mom’s for breakfast and tea until I leave for work at 08:10.

The spanner in the works at the moment is that it is currently school holidays.  So everything is a bit more relaxed.  And Wouter decided to work from home this morning.  Which meant that I was the only person in our household on the clock.

Imagine my surprise when I woke up this morning at 08:00.

Boeta played games from early until my telephone’s battery died and then returned it to my bedside table.  I asked him why he didn’t tell me when the alarm went off and he replied, baffled, “You didn’t answer”.  Rightyo.

Next I asked Wouter why he didn’t wake me.  His answer?  “I didn’t think of that.”  Upon my eyebrows hitting the ceiling at that bit of genius he added with his lost-little-boy-look “I forgot….?”.  OK then.

Suffice to say, I had a very fast morning.  And I am seriously doubting the general state of mind of the men in my house.