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?


2 Responses

  1. I hear you! I do hope that the heart will improve if that is possible at all. Let’s face it – he is a miracle to all accounts

  2. Kannie glo hoe ver julle al gekom het nie! Ek lees so min die blog deesdae…maar ai dit maak my hartseer elke keer as ek dink dat ons elke dag dit gevolg het vir 2 jaar of so. Ongelooflik hoe wonderlik julle Woutertjie is! Vat so!

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