The perils of modern living

Hallo.  My name is Suzanne and I am the mother of a 4 year old technophile.

Why is it that children are so much more in touch with technology than previous generations?  I had to learn to use computers because it was an integral part of my studies.  It is impossible to get through studying these days without computers.  If I never studied there is a possibility that I wouldn’t have known my RAM from my ROM. 

So why does my 4 year old know more about computers, how they work and how to make them work than most adults?  He hasn’t studied anything except The Relevance of Lightning McQueen in Daily Suburban Living.  Admittedly he has made a rather thorough study of the topic.

My mom is proudly technologically challenged.  She can get the washing machine to wash, the dishwasher to do its thing and she can heat things up quickly in the microwave.  All the other buttons on the microwave have never been touched and I don’t think they ever will.  She can also answer her cellphone.  I am very impressed.  When they got their first cellphone she didn’t trust it at all.  Picture the scene.

It is 1995.  The phone rings.  And rings.  And rings.  And dies.  Starts ringing again.  My mom realises that it was her phone ringing all along.  She grabs the phone.  Holds it out as far as her arm can reach (she doesn’t have time to go and get new glasses – her arm is still long enough).  It is still ringing.  She glares at it.  It rings.  She stabs at the “little green phone” button with one finger.  She glares some more.  Carefully she lifts the phone to her ear and says “Hallo???”.  By this time the caller was very impatient and thoroughly confused.

The strange thing is that you could actually hear each of the 3 question marks.

She has gotten better at it though.  She can now type text messages.  Usually along the lines of “Onthou.Om.Te.Bel” – the space button just doesn’t want to submit to my mom’s attempts at taming it.  But hey!  She is making progress!

And then you have Woutertjie.  In a moment of desperation in hospital I showed him the online Micky Mouse and Thomas the Tank Engine games.  Now he switches the laptop on, connects to the internet, opens Internet Explorer, opens up the “History” button and then calls me to select the correct website.  He can’t read and that is the only reason why he doesn’t choose on his own.  And when he is done he selects “Start”, “Turn off computer” and “Shut down”. 

(What amazes me even more is his grasp of the English language.  We are Afrikaans and raise our children Afrikaans.  From watching movies and playing games Woutertjie has picked up enough English to be able to follow the gist of most conversations.  He also commits English.  Committing is like speaking, but a lot less understandable.)

You should see how Boeta follows the sometimes very complicated instructions of the games.  His English vocabulary has expanded a lot.  As a result he has now declared that the Afrikaans word “skaduwee” doesn’t exist and he only has a shadow.  “Kyk Mamma!  Kyk my shadow!”

I finally understand why my mom just shakes her head at all the new technology coming along.  She says she doesn’t need to keep up – she has children to do it for her.  At the rate Woutertjie is learning he will know more than I do about computers by the time he is 6 years old.  What are the odds that I will be able to keep up with him when he really hits his technology-stride by the time he finishes school?  I will look like an incompetent dinosaur of the analog age.  But then, with such a genius for a son I wouldn’t need to do much.  He could do it for me.

Oi vey.  I am turning into my mother.

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Things that get to me

I know that we’ve been in hospital too long when I start asking people what day it is on an hourly basis.  And when they tell me “it’s the 12th” I politely say “yes but which DAY is it?”, while I wonder why anyone would need to know that it is the 12th.  And yet, 5 months ago I expected to hear that it was the 12th.  Now I can’t keep track of the name of the days anymore.

The main problem is that the nursing staff doesn’t work “proper” hours.  Their shifts are more than 12h long and they work 3 days , are off for 2, work 4, off 1, etc.  Or something like that.  Which means that there is no rhythm to their presence.  It is confusing.

I spent the whole of Friday thinking that it was Sunday. 

Another major issue for me is Boeta’s hypo-Hb induced humour-deficiency.  This is my fancy speak way of saying that he becomes a moody teenager the moment that his haemoglobin level falls.  And it has fallen.  He is unpredictable, bursts into tears for no reason we can fathom and in general drives us to drink. 

Before you start worrying, the drink is always coffee or tea.  Because whoever makes it has a 5 minute window away from the children.  They are being exceptionally trying and we are having trouble biting our tongues and dealing with it.  Carien is coming down with a cold and Woutertjie is still very un-domesticated after spending so long in hospital.  It takes him a while to get used to normal life again.  And while we know that we should be patient it is getting a lot to ask for.

What to say?

I don’t know.  Today I am short of words again.  I am having quite a rough time at the moment.  We were warned that this would be a roller coaster ride and indeed it is.  I’ll be fine again tomorrow (or at least act it) and continue to “make normal”.  I’m the mommy.  It’s my job.

I donated my 59th unit of blood today.    I think it is impressive.

Earlier today the blog received it’s 20 000th hit.  This means that in a few short months you and you and you have checked in on our lives 20 000 times.  It makes me feel humble and sad and honoured and loved that you care that much about us.  Thank you.

Boeta had his 20th session of radiation today.  8 sessions left until the end of this chapter.  I really can’t wait.

We are going to Wouter’s parents in Pringle Bay this weekend, provided that Boeta is OK.  We all need to get away from our day to day reality for a bit and look at the world outside before we get back on the roller coaster.  I don’t even like blooming roller coasters.

On sucking it up

So after a very emotional 24 hours of feeling very sorry for myself I am back.  Meaning I am back. 

I don’t feel comfortable feeling sorry for myself even though I do it very well (if I have to say that myself).  By nature (and by drama queen personality) I am more of an optimist.  And after all, pessimism and drama queening don’t mix and I am above all a drama queen.

So as of now, until my next meltdown, I am back and “making normal”.

Today was a good day.  My middle and baby sisters were both here today.  It really made Carien’s day because she is infatuated with my baby sister and my middle sister’s son, Adriaan.  He is 3 months younger than she is and she adores him.  She calls him Ada and puts up quite a scene when she wants him here now and he isn’t.  Someone needs to explain to her that he lives about 100km from here on the other side of the mountain.

It was the CANSA shavathon and we had a family outing to shave or spray.  My mom (who wouldn’t know what to do with a facebook account even if she had one), Chrismari (aka Tiesies), Carien, Adriaan and I had our hair sprayed.  Berno (Lielie’s husband) had a shave and a spray.  Lielie was at a proper hair appointment when we took the plunge.  Chicken! LOL!

Wouter is already shaving his hair in solidarity with Boeta so he had a scalp spray and I wrote “CAN” on the back of his head.  Do you remember the ad with the tagline “cancer can be beaten” with the guy with “can” shaved into his hair?  Wouter did the hairless impression of that. 

My favourite bit of the day was when Tiesies and I decided that Berno couldn’t have a uniform shave.  Oh no.  We helped to shave his hair and gave him a mohawk.  He is soooo not the mohawk type.  Especially not the pink mohawk with green back-and-sides type.  He was such a good sport even though he knew that Lielie would have a moment. 

Lielie has lots of moments.  Compared to her I don’t qualify for drama princess or even drama lady-in-waiting.  She can out-drama me any day.  And added to that Lielie is very gullible.  So when Berno told her that he will keep his mohawk she believed him.  Because that is what Lielie does.  We love her.

She will probably flap her hands at me for telling this story but I can’t resist.  A while ago they went on holiday and Lielie was going to fly for the first time ever.  She was very excited about it.  The morning of the flight she phoned me with that tone in her voice.  The tone that says that she just heard something that simply can’t be true, can it?

Berno told her that in order to plan for the flight not only your baggage, but you yourself are weighed.  In public.  For everyone to see.  Compulsory, because after all, they need to know how heavy the plane is going to be.  Me being me, I did not disillusion her and tried to explain that she can angle her body to be in front of the scale readout so that only some people will be able to see.  Lielie very nearly called off the trip.  She got soooo worked up!  It was fun.  And because we love her we only let her steam for an hour or two before telling the truth.  We really do love her.

We are doing well today.  Boeta is still in isolation but strangely it bothers him less than Carien.  She gets very aggro after a day at home and demands to go to my parents during the day.  Oh the rejection!  Of course my parents are very chuffed.

So that was today.  Will let you know how tomorrow goes.  Boeta got his booster today (Wouter and Tiesies took him) and will get another tomorrow and then on Monday we will start with chemo again.  Provided that his cell counts are high enough so you know what we need – start praying.  We don’t want to delay chemo.

And in case you are wondering, the start day is Monday because it is a 5 day course and it is difficult to get the chemo mixed over the weekend. 

Wouter’s parents have already planned their week so that his father can sleep over at the hospital.  I wanted to put their facebook link up but they don’t have any pictures loaded so that you can see what they look like.  Skimp, skimp, ma!

See, I really am sucking it up and I’m feeling so much better than yesterday.  Thank you for commenting, praying and being there for us.

Day 2 of 5

Well, Woutertjie is done with the second day of chemo.  Three more to go.  He is on a drip the whole time.  Literally.  Not that he lets it stop him.  He makes us cringe with the things he gets up to with the Broviac in tow.  We keep on cotton-balling him and he keeps on ignoring us.  So in summary we have a normal relationship. (Wouter is backseat-writing and he wants me to finish the previous sentence with an exclamation mark but I refuse.  I know you wanted to know this.)

Today was another good day.  Boeta is still refusing to eat any “normal” food.  Anything resembling a vitamin is firmly rejected with a “no mommy, I have a krokkenoster in my tummy” while any junk food is savoured.  Except for cherry tomatoes.  He still likes them.  Go figure.

I presented him this morning with his breakfast.  He refused.  I asked if he wanted droëwors (dried sausage for the non-SA readers).  He refused.  I took a looooong piece, told him that it was mine and that he was not to touch it under any circumstance.  He finished it within 5 minutes.  I dedicate this moment to my mother, who, using similar deplorable techniques, managed to raise 4 well-adjusted, somewhat-honest children.  But we are undoubtedly fabulous.

To get back to the point:  This is a 5 day chemo session.  Then Boeta has 2 weeks off with weekly blood tests but no chemo.  And then we redo this complete set of chemo treatments:  a 3 day treatment, 2 weeks of one day treatments and then a 5 day one.  After that, the week of the 17th March the re-assessment happens.  Then they redo all the scans and decide where to from here.

We need you to pray that they will see significant, if not total, reduction in the tumours.  Specifically please pray that the tumour in his heart will disappear.  That is the biggest concern because everytime he needs to get anaesthesia it presents a huge risk.  A tumour can be surgically removed from many places but not from inside the heart.

Thank you so much for reading our blog and for commenting and please feel free to give the link to others!  We appreciate your prayers and support more than we could ever tell you.  Thank you.

Hair, hair, everywhere

It has begun.  Today I noticed hair on Boeta’s pillow for the first time.  And when I looked I realised it is on his pillow, on his sheets, on his clothes, everywhere.

The upside is that he won’t have to bother with his greatest hate anymore: washing hair.

For some reason Boeta has never taken to washing hair.  From birth.  Before he was old enough to know whether he liked something or not he already knew that he didn’t like washing hair.  It doesn’t help that he has a lot of hair.  He had only fluff until he was well over 1 year old.  When his hair finally started growing it went wild.  But then, with Wouter and I as parents it isn’t that surprising.  We both have daily hair issues, all of it involving taming the lot.

In a way I am grateful that he is losing his hair so soon into the treatment.  The chemo is definitely affecting his body and therefore should do the same to the tumour.  I wish I could pull the tumour bit by bit from his body like I pull out his hair.  Everytime I run my fingers through his hair I come away with a handful.  And while I am grateful that the chemo is working it feels like he is losing his innocence hair by hair.  No 3 year old should have to be constantly aware of the tube coming out of his chest, the drip tubes connected to it, the whole everything involved in living in a hospital.

But the 3 year old in question is too busy playing, talking and charming the nurses to be bothered with his mother’s issues.  And I’m not about to introduce him to mine.  So we are “making normal” and soldiering on.