We were quietly confident and satisfied that, after everything that he went through, Woutertjie had very few issues left over. Let’s do them one by one.
1. He has 6 dots tattoo’ed on his chest. They were used as markers when he got his radiation. When you don’t expect your patient to survive, you aren’t really worried about making permanent marks on his body. It constantly reminds me of how far we’ve come and how blessed we are. He seems to think it is normal to have dots.
2. He is a lot smaller than he would’ve been. At diagnosis he weighed 20kg. He was a muscled, tough little boy and taller than all his friends. Now it is just about 4 years later and he weighs 22kg. He is the tiniest child in his class. Girls included. People ask me if he was prem. He wasn’t. He is bone-skinny and simply doesn’t put on weight. His shoulders are knobbly and hard, not at all like you would expect at his age (7 years 7 months).
3. Fertility. I don’t talk about this, not even to his oncologist. I pray that (once again) the doctors are wrong and that the bucket loads of chemo didn’t do the damage that they think it would’ve. They’ve been proved wrong before.
4. He is totally blasé about death. After having so many of your friends go to heaven it becomes the obvious next step. How deep his quiet worries go we don’t know. For a 7 year old he can brood up a storm.
5. He is totally out of whack with children of his own age. It is like he is both a 14 year old and a 4 year old, rolled up into a 7 year old body. It makes it very difficult for him, but also for his teachers who have to deal with all the bits.
6. He has a deathly fear of nasal spray. Of anything being close to his nose, actually. And in our lives, “deathly fear” has literal meaning.
During his treatment they had to take samples to do viral panels three (?) times. It was the time that bird flu was big and bad and
we the medical staff lived in constant fear of him picking it up. We weren’t that paranoid about it. Purely because we weren’t smart enough to be.
To get a mucous sample they stuck a plastic tube down his nose. And I do mean down – the bit of the tube that goes in is about 15cm long. Try sticking that down your nose and feel what it feels like. And just for fun, add some suction to it, in order to get the stuff out from wherever it is.
And then he also had nasogastric feeds for a month. The tube goes down your nose and throat and eventually ends up in your stomach. Putting it in is bad. Taking out too. Do you have any idea how long the tube is that needs to be pulled out through your nose? And the tube needs to be replaced weekly.
After all of this we weren’t surprised when he started going totally hysterical as soon as we even mentioned nasal spray and we’ve managed to get through colds and runny noses without it. Zani (SIL) once made the mistake of trying to spray his nose. We (eventually) found him hiding behind a tree, shaking and crying. She still feels guilty about it!
On Sunday night I learned that there is a seventh point to be added.
He is absolutely petrified of nausea / vomiting.
This is the boy who used to just go with it. You are nauseous? You vomit and then you continue with what you were doing without even blinking.
Imagine my surprise when I woke up with him heaving but hysterically mumbling about how he wasn’t going to “spoeg” (vomit). It to me 20 minutes to get through to him (your tummy knows what makes it sick and it needs to spit it out so that it can feel better) and another while before he stopped fighting it.
When we finally got back to bed he lay in my arms shaking with terror.
I also learned that Carien didn’t come through scot free. At that time of night she woke up and insisted on standing with Boeta, rubbing his back and shushing him while I fetched medicine. She is 5 and usually completely self-centred. But when it is time to step up, she does it in a big way.
It turns out that Boeta has/had tonsilitis (longels, according to them) and now Carien caught it too. I didn’t know that tonsilitis was contagious. Now I know.
And I know that our children are special in so many more ways than I ever could imagine.