OK. We are ready for the 5 weeks ahead

In stored-up entertainment, at least. 

After spending the last 10 days in isolation, I decided to risk Cristina’s wrath and let Woutertjie face the outside world again.  On Friday we went to visit Wouter at their new offices.  I realised just how little they got out when we parked and Carien piped up with “Mamma, ons in die kar wag” (Mommy, we in the car wait).  When Woutertjie is in isolation they wait in the car when I get out to talk to do something.  Before something tells me to be careful about leaving them, please be informed that I don’t let the car out of my sight.

Upon leaving I didn’t feel like going home, so we ended up driving to Stellenbosch.  The idea was to see if the strawberry farms on the way to Stellenbosch still had strawberries in the lands so that the children could pick some.  They didn’t so we went to the Simonsberg cheese factory shop.  That has been a favourite haunt of mine.  I refuse to pay what the shops are charging for cheese and there they still have reasonable prices.  R50 / kg I will pay.  R70?  Not so much.  The children had such fun picking out flavoured milk and basically browsing.  It is a small shop so I could keep them under my eye even though they we running loose.  It is times like this that a bald child really helps.  No one complained when the two of them explored on their own.  Given, they were very good and looked at everything without touching.  And they chatted up everyone in the store.  I never claimed to have overly shy children!

Following that we went home.  Carien was asleep before we got home.

On Saturday we started off with a trip to Cape Gate shopping centre – the closest to our home and since we always park in the underground parking lot it is known as “die quick tunnels winkel” (the quick tunnels store).  Yes, our children have watched to many episodes of Gummi Bears.  Woutertjie absolutely loves shopping.  But it takes forever to get nothing.  He wants to look at everything and touch even more.  And I humour him.  Considering how little he gets out I think he is allowed to go overboard!  Carien was such a little star (as always).  She is a shopper at heart too.

When we eventually finished there we took off to the miniature steam trains.  Woutertjie wore his new Thomas the Tank Engine shirt and shorts that one of the onco-mums bought him, wore the Thomas cap that she bought and blew his Thomas whistle, also courtesy of Justin’s mom.  Carien also got a whistle and between the two of them they managed to make quite a lot of noise!   Wouter’s dad went with us and I suspect he had an even better time than the children did.  Boys and toys…

Today we attended Daniel’s baptism.  He is Wouter’s brother’s youngest son.  It was a good day.

So tomorrow we are off to hospital.  I expect that we will do the day-patient thing this week and then I expect Woutertjie to start dehydrating by the weekend.  But this time he is getting a naso-gastric tube before that happens and we will try to keep him hydrated for longer before having to go to hospital.  Thanks for the tip, Johanetta!

Flash update

As you probably know by now, when I suddenly go quiet it is because I’m not feeling at the top of the world.  So don’t fear – we haven’t dropped off the edge of the earth, I’m just hiding from the world a bit.  I will see you soon.

Oh – blood results for this week:

Hb 7.7 (normal 14)

platelets 250 (normal)

white cell count 1.5 (normal 5 – 15)

neutrofil count 0.3 (very very very low – no bacterial immunity)

On the upside, Woutertjie is looking very well and doesn’t seem bothered by the numbers.  And his immunity to mumps is intact so we don’t have to worry about that.

In hindsight

Over the years there have been so many times that I asked myself what the purpose of my current situation might be.  I prefer believing that everything happens for a reason – if not for that I don’t see why one shouldn’t take the easy way out of any situation.

As time went by I could see the patterns behind me.  I had to do certain things or be exposed to certain situations to form me into the person I am today.  What I am supposed to do with this today-person I don’t know.  But in 10 years time I am sure I will be able to look back and recognise the purpose.

One of the things that I’ve never been able to understand is why I had to spend 2 years working for the worst employer in the history of mankind.  That woman drove everyone nuts and blamed the sky-high turnover of staff on laziness / stupidity / whatever took her fancy.  I, the ultimate play-it-safer, resigned from my position before I had another job lined up.  I was that desperate to get away from there.    Today I realised that there may have been a bit of method in that particular madness.  Not her madness though.  No method there.  At all. 

As we were going to get Boeta’s weekly blood counts done, my mom phoned to tell me that someone the children spent a lot of time with last week has contracted mumps.  Let’s see.  One the one hand, mumps.  On the other hand, a child with no immunity.  And me caught in the middle of the hands.

Joy.

Not.

The interesting bit for me was the way that I grabbed Woutertjie’s vaccination chart on our way out of the door and knew that they needed to do an antibody titre to see if he had enough defense against mumps.  Which they did.  I am still waiting for the results on that – since Gerrit hasn’t phoned me I guess that we are safe.  Either way – I knew that I had to tell the nurse before she drew the blood that Woutertjie was potentially exposed to mumps so that they could get the tests done.  I am impressed with myself and my snippets of knowledge.  But then, I am fabulous that way.

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PS:  After leaving the horrible boss I got a job with the best boss in the whole world.  When Inga heard that I had to resign from my last position she immediately mentioned that she may have bit and pieces of contract work for me when I am ready to return to the workforce.  I think she may just like me too.

Carien, our half-toothed wonder

Oh the joys.  Tonight Carien and her cousin Adriaan collided.  Ada received a bump on his head.  Carien cracked her front tooth in half.  It looks like two interlocking L’s.  She keeps on wiggling the back, loose part forward and back but it is definitely hurting.  She keeps on telling me that “oom Sejjit” (oom Gerrit, the paediatrician) must make her better.  My poor little baby.  I gave her some Panado and she is sleeping now.  We’ll see wat tomorrow brings.  And on Monday I will have to find a dentist willing to work on the most headstrong child ever.

Want to learn patience?

Woutertjie, Carien and I finally went for the full blood count that should’ve happened on Monday already.  His white cell count is 1.1 and neutrofils 0.7 – we are firmly back in isolation.  His platelet reading was 70 but since he is bruised all over* Cristina decided that he should get a platelet transfusion.  His platelet count will drop some more in the days to come so we are pre-empting.

Sharon (our paediatric oncology nurse) phoned at 12:00 to tell me that Cristina wanted Boeta to get a platelet transfusion.  I already signed a temporary discharge form for in case we needed it and left it with her, so I phoned the hospital to open a file so long and Sharon did the paperwork.  They can’t request blood products from the blood transfusion service unless they have a file number.  Once you open a file at hospital they assume responsibility for your safety.  Therefore, if we want to go home and wait for the transfusion to be ordered and delivered we have to sign a temporary discharge, absolving the hospital of responsibility.

Either way.  At 12:00 Sharon put in a request for a mega unit of platelets.  By 16:00 she phoned to say that it was still not ready but she would let me know when it was.  At 20:15 Iola, the night sister, phoned to say that the platelets arrived.  And through it all we didn’t get upset or impatient once.  Why?  Let me tell you.

The blood service keeps lots of blood products in stock.  Full blood, plasma, red cell concentrate (this is what Boeta gets when his Hb drops) and small units of platelets.  Each hospital keeps a couple of units of blood for emergencies.  But for our purposes the blood gets ordered from the blood services depot and then sent to the hospital.  A unit of red cell concentrate costs about R800 (a loaf of bread is about R10) – since donors don’t get paid for donating and the blood service is a non-profit organisation, all of the cost is as a result of processing and testing. 

Sometimes we get the red cell concentrate within 2 hours.  Sometimes it is more like 4 hours.  And then it takes another 4 hours to infuse.

Platelets are a different story.  It takes many many hours to get ready but runs in within 1 hour.  The onco-children get extra large units of platelets, known as mega units.  These cost R7500.  Since platelets can only be stored for 5 days it makes no sense to keep these mega units in storage.  Chances are it is going to go off before it is needed.  So whenever there is a request for a mega unit, the blood service has to call up a platelet donor.  The donor then needs to get to the WPBTS head office where the cell separation takes place.  It takes 2 hours for the process – the blood runs from the donor, through a cell separator and then the platelet depleted blood goes back into the donor.  Two needles, in other words.  After the donation the platelets need to go through the usual safety testing.  After that it needs to get collected from the head office in Pinelands and transported to the hospital.  No wonder it takes that long. 

The first couple of times when we were waiting and waiting and waiting for platelets I got quite impatient.  Until I heard how it works.  Now I am so grateful that somewhere in Cape Town someone gave up a large portion of their day to donate cells to keep my son healthy.  To that nameless, faceless person:  Thank you.  From the bottom of my heart.

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*Boeta has rediscovered his love of Buzz Lightyear.  He has been jumping from the armrests on the couches shouting “to infinity and beyond” this whole week.  And he has been crashing his plastic motorbike (into Carien – you should see her bruising) and falling his butt off so I’m not overly surprised at the extent of his bruising.  I’m amazed that it wasn’t worse!  LOL!

Denial is such a pretty place

I had a major breakdown today.  Turns out I am a bit less stable than I acted.  But then, that is fairly typical of me. 

I am still struggling to deal with everything that happened in the last 10 days.  Hearing that one of our children has passed away has upset me a lot more than I could deal with.  I keep on coming back to the fact that the doctors initially thought we would walk that road within a couple of weeks.  I just can’t deal with that.

Woutertjie was supposed to go for a FBC yesterday but the day overwhelmed me and today I just didn’t have the energy after letting off steam.  So tomorrow Carien is going with for the “bloedtellings” (blood counts).  She is very excited to be able to join in the adventure.  Go figure.

From the mouths of my Wouters

Sometimes the best response I can give the men in my life is complete silence.

Case in point?  Wouter has this hugely annoying habit of diverting his phone or leaving it on silent.  No one can ever get hold of him on his cell phone.  Me included.  Sometimes it isn’t that much of a problem – he does phone back eventually.  Usually it makes me go from completely calm to raving mad within 2 attempts.

Last week we were in hospital when I noticed his phone lighting up, meaning that it is on silent and something is going on.  I tell Wouter who has a look and determines that he missed the call.

W:  (while putting down the phone)  I’ve had at least 60 phone calls today and I missed 2 more now.

S:  (irritated because he doesn’t look as if it bothers him)  So now you are going to ignore those two?  Very mature reasoning there.

W:  (self-congratulatory)  It is what any self-respecting adult ostrich would do.

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This week I realised that Boeta is cut from the same cloth as his father.  He may be 4 but his mouth is at least 10 years older.  Boeta and Carien were screaming at each other.  Not screaming anything, just making noise.  After repeatedly asking, demanding and threatening for silence I lost my cool and lined them up in front of me.  It went like this.

S:  (making angry eyes)  Wouter en Carien, kyk vir my oë.  (Wouter and Carien, look at my eyes.)

Boeta and Carien look everywhere except at my eyes.

S:  Kyk.  Vir.  My.  Oë.  (Look.  At.  My.  Eyes.)

Carien squints from under her eyebrows while Boeta does saucer eyes at me.

S:  How many more times to I have to ask you to stop screaming?

Boeta:  (melodramatically frowns and scratches his head as he thinks it over)  Twee keer!  (Twice!)

Now I ask you.  What’s a mom to do? 

We are home

Today was one of the hardest of my life.  Winé was laid to rest in Ashton.  Wouter and I, my mom, Deirdre (Ethan’s mom), Sharon (our oncology nurse) and Iola (the sister who first admitted Winé) made the journey to attend.  It is about 1.5 hours from Cape Town.

It was a very emotionally draining day for all of us, but ultimately it was a good day.  Does that make sense?  I feel better after being able to “formally” bid Winé farewell.  We brought 12 white and pink helium balloons with us and let them loose after the service as a symbolic way of letting go.  Seeing those balloons being whipped away in the wind and then skipping away over the mountains cheered me up in a way.  Like them, Winé isn’t tethered to Earth.  She was cut loose from sickness and pain and could join our Lord in heaven.

Please keep this family in your prayers now more than ever.

To the driver of the brand new black GTi Golf, registration number CF46???

Maybe you shouldn’t have parked in the disabled bay in front of the local store and then walked in to get a newspaper.  But you did.

When Wouter confronted you about it, maybe you shouldn’t have answered “Who the f#ck cares about that?  I don’t care!”.  But you did.

When you saw me staring at you, maybe you shouldn’t have pulled faces at me.  But you did.

Maybe I shouldn’t have flipped you the bird.  But I did.

And it felt good.

Week 49 of 56

Woutertjie had his chemo for the week yesterday and was discharged this morning.  He got Vincristine, Actinomycin D and Cyclophosphamide.  The upside is that it is a short hospital stay (the longest wait is the 12 hours of hydration afterwards) and he doesn’t get that nauseous.  On the other hand it knocks his bone marrow flat, leading to low immunity, low platelets (bleeding risk) and low haemoglobin (anaemia).

Oh well.  We will deal with the hand we are dealt.

Carien seems to be doing better.  She still has 3 days of antibiotics and 10 days of nasal spray left.  But she complains less and doesn’t have fever.  She still covers her ears when there is lots of noise so I guess her ears are still quite sensitive.  But she is doing well.