Day 4 and counting

It’s been a rough 2 days.  Boeta has started running fevers in the high 39 range (so far not 40).  He is getting several different antibiotics at the moment (Piptaz, Amikacin, Vancomycin, Diflucan), Zofran and Maxolon for nausea, Zantac to try and sort out his stomach, Besotec inhalation for his respiratory infection as well as GCSF injections to kickstart his bonemarrow.  And he is back on TPN (receiving all his nutrition via his Broviac).  So Cristina feels that we should only give him paracetamol for fever and not load him up with even more medication. 

In practice it means that his fever is under control for 4 hours and then we sponge him for another 2h before he can get meds again.  My hands are in sore need of moisturiser – I never realised how drying water could be! 🙂

Carien is finally getting over her cold and is so cute.  She is taking strain at the moment.  She misses Boeta, she misses us and she is very aware that something is going on.  I really hope that we aren’t scarring her for life.

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Beginnings and endings

Yesterday I met a family whose 14 year old son was diagnosed with leukemia hours before.  Today I met a family whose 5 year old daughter finished her treatment for rhabdo and had her drip port removed. 

One family devastated by the diagnosis, another jubilant at their child’s return to health.

Both scared senseless of the future.

Because for both what lies ahead is a great unknown.  When your child is diagnosed with cancer your think that everything will be better once the treatment starts.  When you are in the midst of treatment (like we are) you think everything will be rosy when you reach the end of the treatment.  But once you reach the end of treatment, what then?

The one thing that I hated during my pregnancies was the time leading up to sonars.  The day before a scan I was in a total state, imagining everything that could go wrong.  How much worse will it be when you have to count the hours and days to cancer check-ups?  I guess when we get to that stage we will take it one day at a time, the way we do now.

Emma is in remission and will now have 6-weekly checkups and 3-monthly scans.  As time goes by the visits will become fewer. 

Stephen will most likely start chemo tomorrow.

Please keep both these children and their families in your prayers.  And if you could spare a prayer for us too we would welcome it.

Lest we forget

We were reminded again not to plan anything or count on anything or think ahead.  Woutertjie is back in hospital.  He had fever this afternoon (38) but it cleared by the time we got to the hospital.  He has been constantly nauseous since his chemo 10 days ago and it should have been better long ago.  Right after I let Gerrit know that he had fever, Boeta had another vomiting spell but this time with blotches of blood in it.

So now we are in our second home again ;-).  Gerrit ordered a nasal wash for viral PCR.  We will know soon enough if anything is lurking.  Actually I have no doubt that something is lurking – Carien and I are both sick after all.  Boeta was very upset at the physiotherapist who did the nasal wash.  She squirted saline into his nose and then sucked it out again with a long tube.  He is telling everyone to not allow her into his room ever ever again.  Gerrit tried to explain to Boeta that he ordered it and why.  Boeta isn’t interested in any explainations.  She did it, she is on the persona non grata list and that is it.

Gerrit suspects Boeta may have gastritis following all his vomiting.  Last I heard he was conferring with Cristina on the phone about this.  I suspect they are going to medicate him for it and then see if it works.  I wouldn’t mind if he started eating again.  It is definately not what I am used to.

Carien is feeling better.  Her nose is less runny and she is back to being her usual sunny self.  Based on how long she felt bad I suspect we might be here for a while… Please say a prayer for us.  We want to go home.

(Ab)normality

You know that you are living a less than normal life when you phone the paediatrician out of the blue and when he answers you realise that he has your number saved on his phone too.

Freaky stuff.  So today I am dedicating this post to all the other things that are normal to us, but very abnormal to everyone else!

I go to the grocery store and buy bread, milk and snacks. 

The ladies at the tills look at me in funny ways because I have a trolley full of cookies, chips, popcorn, cereal but no food.  The moms at Woutertjie’s play school (that he isn’t even going to at the moment) are still supplying us with cooked meals.  Every week we receive a heap of frozen meals.  Today it included a jar of guava halves.  It looks devine.  Woutertjie will probably not appreciate it that much.  He has now developed a thing about pips.  Strawberries used to be his favourite favourite but now he doesn’t want it because there are too many pips.  And I am not going to even try getting them all off.  Do you know how much easier my life is without having to cook?  As it is I am hanging on with my last finger nail. 

We know exactly what Boeta’s stool looked like today.

What can I say?  It is an indication of his health.  Let’s leave it there.

We can’t imagine life without schedule 4 or 5 anti-nausea medicine nearby, at R55 per tablet.

Schedule 0 – 2 things you can get without prescription.  We don’t bother with that.  We go for the big guns! 😀  The tablets are so expensive that our pharmacy doesn’t stock it.  We have to request it and then they deliver it the next day.  But it works and that is good enough for us.

Carien is 1y9m and knows the Panorama MediClinic inside and out.

When we drive past she shouts “tau”, for “hospitaal”.  She knows the way to the paediatric ward, including going down with the lift.  Most adults get lost on the way.

Wouter receives daily emails from our medical aid (Discovery) with updates on our claims.

When last did you have daily medical expenses for months on end?  I shudder at the thought of going without medical aid.

The way that we honestly feel very blessed and fortunate. 

It is strange how one’s understanding of “we are doing very well” can change so radically in such a short time.

And yes, we are doing very well!

Penguins and suicidal tendencies

S:  Give me a topic to write about.

W:  Penguins.

S:  OK, what should I write about penguins?

W:  That they are black and white?

And that is how far I’ve managed to get.

So let me add that Boeta received his chemo and blood transfusion today and that everything went well.  His moods aren’t improved by much, but at least now he tells us to close his bedroom door so that he can cry in peace and not wake Carien.  Which brings us to penguins. 

I don’t know why it brings us to penguins.  Wouter is standing behind me and dictated the fact.  Which does bring us to the conclusion that men can indeed not multitask.  Standing and thinking are obviously mutually exclusive. 

W:  Like black and white.  We are back to the penguins.

I think this is where I am going to post this and give it up as a bad job  go to bed  not think about it any more

W: waddle away?

S:  (shocked silence)

Should I kill him now or later?  My vote is for NOW, but I’ll wait for your opinion.

A new day

When I got to the bedroom last night Wouter was lying flat on his back with Carien starfished on top of him.  She really tried to occupy as much space as possible, as if she was trying to claim her daddy for herself and no one else.  It was cute.

 The cold medicine that I gave her (well, the half a ml that I managed to get own her throat) must have had some sedative effect because that child slept like nothing I’ve ever seen before.  I think I have to give her some more tonight *insert evil grin here*.

Boeta is such an easy child to get medicine into.  We hand him a syringe with the meds and he drinks it.  All done.  He even wants to drink his milk and cooldrink using a syringe.  He asks for “medisyne melkies” (medicine milk) and that means that I have to give him a bowl with milk and a syringe and leave him be.  He is remarkably accurate and doesn’t spill.

Carien.  Oh Carien.  This child is just different.  Whatever she is told to do is exactly the opposite of what she wants to do.  When she doesn’t need medicine she brings a spoon, coughs, spits on the floor and asks for medicine.  Now that I want her to take the medicine she flatly refuses.  She shakes her head and says (very sweetly and reasonably) “nee-a mammaaaa”.  And when we manage to get the medicine into her mouth she blows it out in a spray of spit.  So in the end I have to hold her down, keep the syringe between her teeth so she doesn’t bite down on my fingers, keep her lips apart so she can’t spit and then just hope most of the medicine go down her throat.  I estimate that 60 – 70% doesn’t even get close to the back of her mouth.  She is a fighter, that one.

At the moment Boeta and I are in hospital, waiting for his chemotherapy (which will be 15 minutes long) and a blood transfusion (which will be a day long).  Oh happiness.  I really hope that we will get out of here before dark but I’m not putting any money on the possibility.

Boeta and Ethan (nephroblastoma – cancer of the kidney) are playing the Cars PlayStation game.  To be precise, Ethan (5) is playing and Woutertjie is looking.  But it is keeping them both occupied and quiet so that is good enough for me.

OK, I am not amused anymore

Right at the start of this journey we were warned that our family life, emotional stability and marriage were going to take some hits.  Yeah right.  Some hits.  That’s like saying T Rex was a large-ish lizard with socialisation problems.  This is way more than “some” freaking “hits”.

This weekend has been the last bloody straw.  I am fed up with my children, I am fed up with my husband, I am fed up with trying not to swear while I write this.  (There are children who read this blog.)

Carien has decided to not have the common cold, but rather spice things up with a bit of croup thrown in.  I understand that she is feeling like crap.  She has had a fever since yesterday, her throat is obviously sore, she is generally feeling sick and is even more clingy than usual.  That should not be possible without the addition of large quantities of superglue but she is managing it.  All of this I can understand and I am doing everything I can to make life easier for her.  Do you think she could do me one tiny favour and swallow the medicine that I’m trying to give her?  Oh no.  She’d rather scream, fight, spit and not swallow a single drop.  And then afterwards, while I am still trying to wipe the drops of medicine off my face, she wants to be cuddled and comforted.  I don’t feel like even looking at her after she just about bit my fingers off.  But I have to.  Because I’m the mommy.

Boeta’s haemoglobin is very low (7.8) and yet he seemed to come to peace with it today.  He was a lot easier to be around than yesterday.  So imagine my irritation when Wouter went on a pity-party because Boeta wanted his constant attention.  I’ve been trying very hard not to tell Wouter “welcome to my life” when he comments on how emotionally draining the children can be.  But indeed, welcome to my life!  This is my reality.  I get very resentful when Wouter seems to assume that the children aren’t like that the whole day long.  At least on weekends the adult to child ratio is 1:1.  It is a whole lot worse during the week when I have to try and split myself into half to satisfy them both.  So where exactly does Wouter get the right to get resentful because he hasn’t had time to do anything for himself today? 

I bought soft rolls today.  I stood in a queue to get fresh rolls because the prepacked ones where stale already.  I didn’t feeling like queueing but I did because I wanted soft rolls.  Wouter opened the bag by tearing a hole in the side.  And then he tried to play the innocent, falsely accused victim of constant abuse.  According to him he only tore the bag open like that (completely un-resealable) because he was going to repackage the rolls in another bag.  Right.  Tonight after he went to bed I had to take the (by now half-stale) buns and put them in another bag. 

I feel like I keep on giving and giving and no-one even notices.  I feel wrung out and old, old, old. 

It is at times like these that I am very grateful that we started off with a strong marriage.  Even though Wouter at times irritates the living sh daylights out of me I still wouldn’t want it any other way.  He can be an irritating swine but he is my irritating swine.  And I love him.

And Babes, if you want to state your side of the story, get your own blog.  Hah!