Side effects

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.

Advertisements

6 Responses

  1. .Suzanne, baie voorspoed vir jou en jou gesin. Jy is so ‘n voorbeeld vir almal van ons wat so maklik kla oor die stupidste goed! Ek bid dat julle ‘n gesonde en vreugdevolle Kerstyd sal ervaar en dat God jul sal seen elke dag wat voorle. Baie groete, Alta de Lange

  2. Hey Suzanne, I’ve been away a while and thought I’d come catch back up with blogs…see how you all are…Reading what you said about your little man being fearful of vomiting, it was like reading about myself…I don’t speak for him, because we’re all different, but I wondered whether I could offer a little insight, something he might not yet be able to articulate.

    For a while after treatment I was okay with nausea and vomiting, but I gradually began to notice that either in myself or others I used to have a very strong fear response in response to it….it took a while, but I figured that it’s not the nausea/vomiting itself so much that I was fearful of , rather that it served, through a learned association as a reminder of everything that went with it in the past.

    There’s credible research to back this up, not just me playing the psychologist 🙂 but it seems that at the time we get on with it because we have to, then once we’re out of that critical period, once we’ve had time to process through it, whether consciously or not,…the fear response that may have lain latent for a while comes to the forefront in response to a trigger that usually should be fairly benign, but because of the experience we went through has been powerfully associated with the fear and apprehension we felt at the time, even if it wasn’t always shown back then.

    This may not be the case with Woutertjie, but I thought I’d share it in case it was, and to say that if it continues to be an issue for him that something like cognitive behavioural therapy may be beneficial, as it could help with breaking the association, re-conditioning in effect in order to reduce the anxiety, so that nausea and vomiting doesn’t have such a powerful effect on him. It may be that he overcomes it in his own time, and has no need for such an intervention-but it’s just a suggestion of something that can work 🙂

    Woutertjie had Rhabdomyosarcome hey? I was just thinking, did he have Vincristine as part of his chemo protocol? That’s the one that made me so sick! Not that it’s the only nausea and vomiting inducing one-but it’s pretty notorious for it hey!

    Perhaps you know all that already 🙂 but if not, I hope it was okay to share with you….it’s the least I can do having come out the other side 🙂 all part of the fun and games of survivorship, but know he and you are not alone 🙂 there’s plenty of us here if you ever have questions 🙂

    Kia Kaha

    Sarah

  3. Dearest Sarah

    It is so very obvious when someone has actually walked this road. I suspect this is EXACTLY what W’s problem is. And hearing it from someone who has been there makes is more than just “mommy thinks that…”. He had rhabdo and received bucket loads of Vincristine. During his 56 treatment weeks it feels like he got it at least 90 times. 😉 I have to go and count. Conservatively guesstimating, he got more than 25 doses. And he had the neurological fall-outs – no reflexes, walking funny, those things.

    Please send me the links to research into long term side effects as you find any. Both physical and psycological. Especially those bits of research that you find to be helpful.

    S

  4. Jy laat my hart warm klop vandag. Dankie!

  5. Hey Suzanne, I’m glad to be of help, just ask away anytime 🙂 Carien reminds me of my little sister Rachel…the experience changes everyone, and not necessarily negatively 🙂 I bet despite the usual quarrels, she’s probably fiercely loyal towards Woutertjie 🙂 x

  6. Ag Suzanne, maak mens se hart so seer, maar tog so bly – hy is hier, en hy leef en doen goed.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: