Less said, more shown

I don’t have a lot to say today.  I know.  I am just as surprised as you are.  So I am not going to say a lot and instead post some photos.  I’ve been promising for long enough!

Remember I told you about the chaos when 3 boys of about the same age get chemo together?  Here they are!

boeta-3-musketiers

Woutertjie, Duran (aka Doring) and Enrico (aka Oom Nico).  Woutertjie isn’t very concerned with accuracy of names…!

 

Boeta with the Buzz Lightyear that the radiation “tannies” made for him.  They tried to make it nice for him but since he is knocked out everytime they gave the posters to him.  It has a place of honour on his bedroom wall!

boeta-buzz

 

Carien received this fairy hairband long ago and now she loves it.

carien-hoed

I’m pretty and I know it!

 

This is how any photo session usually ends in our house.  Carien desperately wants to have the camera.  To love, cuddle, carry around and then drop as soon as something else grabs her attention.  This child has the attention span of a drunk ant.

carien-huil

If you look closely you can see her tonsils. *rolls eyes*

OK, maybe I’m not that bad

Woutertjie’s birthday was on the 5th.  I’ve been threatening to take cake to hospital for the staff since then.  For various reasons (I am too lazy / it is too much work / I don’t feel like it at the moment / I am still too lazy) I haven’t.

To make it even more of a mission, the nursing staff work on an odd schedule.  Their shifts are >12 hours so they work 3 days and are off 2 days or something like that.  This week all the staff rotate through the ward today, tonight, tomorrow and tomorrow night.

So yesterday I got my act together and started baking.  I spent the whole of last night in the kitchen and a good couple of hours this morning as well.  In the end I took a mini-truck-load of food to hospital. 

I baked a chocolate cake (Woutertjie helped me to decorate it), bacon & sundried tomato quiche and made my signature custard slices*.  Then I took the easy way out and baked ready made cheese puffs and bought koeksisters.  Because one should always have both sweet and savoury.

And tonight I repeated the process for tomorrow’s staff.

And you know what?  Even though I spent hours in the kitchen when I would much rather have fallen into bed and slept, I don’t begrudge a moment of it.  In a very small way I could show our appreciation to the women who look after our son day after day.

Now I just have to make something for us as well.  Wouter is feeling neglected. 😀

*Ask anyone who knows me.  Sooner or later, but usually sooner, I will feed you custard slices.  I’m good at making custard slices.  But not very humble about it.

 

PS:  We are at 14/28 – halfway through!

And the award for the worst mommy goes to … me!

I kept Woutertjie nil-per-mouth from 10:00 this morning so that he would be ready for anaesthetic at 16:00.  Except that today was a public holiday and the radiation was scheduled for 12:00 instead. 

Fortunately I had Nici’s (the anaesthesia nurse) number when I realised at 10:30 that he should’ve been NPM from 06:00 already.  They decided to cancel his radiation for today.  I am single handedly responsible for delaying Woutertjie’s treatment for another day.  At least everyone involved hadn’t arrived at hospital yet. 

Shame on me.

The bandwagon

Carien has found her new favourite mode of transport.  The bandwagon. 

She has always been a copycat.  We joke that she doesn’t have any ideas of her own.  She is probably the world’s best mimic.  You should see how see copies my dad’s insulin injections:  grab a pen-like item, remove the cap, lift up your shirt, lean back, squint at your tummy, jab the pen into the tummy, press the back of the pen (to inject the insulin), remove the pen, replace the cap, toss the pen onto the table.

Recently she noticed a failsafe way to get attention.

She lets out a wail, bends over and spits onto the ground with lots of facial twitching.  She is mimicking Woutertjie vomiting.

This child is 1y8m and associates vomiting with attention.  Are we raising a closet bulimic?  Should we start worrying about peer pressure already?  On the one hand it is very funny to see her impression of what happens but on the other hand it is sad as hell.

 

Edited to add:

Wouter read the update.  The following discussion ensued.

W:  This is quite a depressing update.

S:  No it’s not.

W:  Yes it is. 

S:  Well maybe, but it wasn’t meant that way.

W:  Everyone is going to be worried about you again

S:  Tough.  They know me better than that.

And then I rushed back to the computer to add this.  I hope you know me well!

13/28 and we are home!

There are some things that I’ve wanted for years but no one ever gifted me with it.  One of them is a set of salad spoons and the other a proper pancake pan.  Let me add that I never even looked to buy it for myself because it was fun to see how long I would not have it and still get by.

Imagine my delight when I received both of the above for Christmas and my birthday last year.  Actually, Christmas and my birthday (on Christmas Day) are a bit of a blur as Boeta was diagnosed on the 24th and we rushed him to hospital on the 25th with fever and unresponsive.  But now that things have settled I am delighted!

I’ve used the salad spoons before but tonight I used the pancake pan for the first time.  Oh my word.  It is so much easier with a light, thin-bottomed pan!  I should’ve bought one long ago.  Now I just need another one to speed up the baking…..  Any bets on how many years will pass before I get one? 😀

The day off from radiation and the different nausea meds they gave him really did the trick.  Boeta is feeling so much better!  As he stopped vomiting we were sent home on Friday evening.  Boeta has discovered toasted cheese sandwiches and Fanta Grape.  Needless to say his diet is very predictable at this stage.

The most amazing thing happened yesterday.  Since the start of this whole journey Boeta had a thing against scans / x-rays /  radiation machines and the people who operate it.  In particular he hated the “Buzz Lightyear spaceship” (the radiation machine) which is why he has to get anaesthetic every time.  He wouldn’t even go near the corridor leading to that unit.  Yesterday we were taking a leisurely stroll through the hospital, we had tea in the cafeteria, we watched the Kois in the fish pond and then I asked if he wanted to go and visit the “tannies” at the Buzz Lightyear spaceship.  And he said yes.  I’ve been asking the same question for weeks in an attempt to get him to get him to face his fear but he usually screams as soon as I suggest it.  I started in that direction (he was taking it easy in a wheelchair) but expected him to change his mind at any time. 

We went through the doors leading to the corridor.  And he didn’t stop me.

We walked all the way down the corridor.  And he didn’t stop me.  In fact, it slopes downhill and he kept on urging me to let go of the chair so that he could go fast like Lightning McQueen. *insert rolling eyes here*

We even met Elizna, the anaethetist and Nici, the right-hand nurse on the way.  He hugged them, told them looooong stories and simply was having a good time.  He never mentioned the “white medicine” once. 

I still didn’t think he would actually go into the radiation unit.  My son astounded me and all the staff.  We went to right outside the radiation chamber and he had loads of fun chatting to the radiotherapists who usually only see him when he is anaethetised.  He also loved watching the other patients receiving radiation on the monitors.  And he was Alex the lion and chased Marileze (the radiotherapist) who was Marty the zebra (refer the movie Madagascar) up and down.  I had to drag him away. 

Later he received his anaesthetic and radiation and woke up with a big, drugged smile.  He seems to have made peace with the white medicine and the radiation.  I am so grateful.  Dealing with his fear has been very hard on me and very hard on him.  I’ve prayed so long for this and I am so grateful!

12/28

One more down.

Turns out it is no wonder that Woutertjie is having a combination of explosive vomiting and expressive diarrhoea. 

The side-effects of radiation (radiation sickness) are vomiting and diarrhoea.

The side-effects of the chemo are vomiting and diarrhoea.

The side-effect of the anaesthetic is vomiting.

And a side-effect of dehydration is nausea.

Wouter mentioned that it is less of a vicious circle and more of a vicious spiral, where things only go downhill.

Between the paediatrician, oncologist and aneathetist they have now changed his medication to see if they can manage to control his symptoms better.  Until it is better controlled he is staying in hospital on a drip to keep him hydrated.

So tonight Wouter’s dad is sleeping over in hospital with Boeta.  They love each other to bits.  And it means that Wouter can get some sleep.  He stayed over at hospital last night.  Note that I used the word “stayed” and not “slept”.  When I arrived at hospital this morning Boeta and I went for a walk about in hospital and Wouter had his sleep for the night – 1.5 hours.  And then he went to work.  I don’t know how much work he got done today but if he didn’t fall asleep on his computer it would be a superhuman feat in my books!

I need to give you an example of how much I love my husband.  Today my mom sat with Boeta for a bit so that I could get some air.  I went to Wouter’s office and made him some coffee in an attempt to wake him up.  His response?  “You are being nice to me.  You are confusing me.”  I love him so much, I didn’t assault him.  Aren’t I the bestest wife in the world?

Still at 11/28

Today I did something I never thought I would do.  I spent the whole day in hospital in my gym clothes.  After I spent an hour in the gym.  Yummy.

The idea was to go to gym, change and then take Boeta for his radiation.  Last night after Woutertjie had another vomiting episode I phoned the oncologist.  Boeta was looking good but

diarrhea + vomiting = dehydration

And being mathematically inclined I thought Cristina may want to have a look at him.  And she did!

So from 10 – 11 Tif and I was tortured to within an inch of total collapse by Lynn, the psychopath personal trainer.  If you ever feel like being driven to the absolute limit of your capabilities, contact her.  She has no mercy and does it with a smile. 

At 11:15 I had to have Boeta at hospital to be checked by Cristina before the anaesthetic and radiation at 11:30 for 12:00.  He was indeed slightly dehydrated (5%) and very pale.  Cristina decided that he had to get lots of fluid and a blood transfusion.  Based on that the radiation specialist and anaethetist decided to give Boeta a rest day.  So tomorrow we are doing number 12.

From now on Boeta will have to go to hospital as soon as his nil-per-mouth starts 6 hours before the anaesthetic.  He will get fluid to make sure that he doesn’t dehydrate.  He was vomiting explosively from last night.  Nothing stays in.  Cristina prescribed the usual Zofran but added dexamethazone to it.  As soon as it hit Boeta began eating.  He is particularly fond of NikNaks (“stok chippies”) at the moment. 

The blood transfusion only started at 17:00.  It takes 4 hours with an hour afterwards for observation.  So the paediatrician decided that Boeta should stay over.  We expected it and fetched overnight things for Wouter when we slipped away to vote.  My mom kept Boeta company while we went to do the right thing. 😉

I realised again today that it makes no sense to stress about things.  I was very down yesterday and I really didn’t feel like radiation today.  When things were going “too well” I didn’t spent as much time in conversation with God.  And then I was very surprised when things weren’t going well and I felt like falling apart.  Last night I prayed for health for Boeta, wisdom for the doctors and strength for me.  And today I received all 3 things I asked for.  Boeta got the medicines he needed to feel well again, the doctors decided to give him a rest day and I got a day off from anaesthetic to reload.  So tomorrow we will continue with whatever needs to happen.  Please join us in prayer for no side-effects, wise doctors, healthy children and strong parents. 

Now I am going to phone my guys in hospital and send telephone bedtime kisses.  Good night!