The only constant is change

Today I want to talk about angels. 

As I was driving to hospital this morning I was really down.  Carien is still struggling with her tummy and Woutertjie was really miserable this morning.  For the first time ever he cried about going to hospital.  He was so tired.  Since Monday I had to pull every stunt I know to get any food or drink into him.  And then usually it came out soon after.  I didn’t know that chemo could cause nausea so long afterwards.

Boeta was obviously tired yesterday already but this morning he was exhausted from when he opened his eyes.  He pulled himself into a little ball and kept on saying that he was hiding.  Hiding from the light, hiding from the krokkenoster, hiding from life.  Just getting him up from the floor where he was hiding (under our bed, no less) was an issue.  Getting dressed only worked once I really raised my voice, told him that he could stay while Carien and I were leaving and walked out of his room.  My poor baby.  He isn’t used to raised voices or threats of being left behind.

Once I got him into the car it was better.  He was happy to go to hospital, provided that we did “belowe belowe” (promise promise).  This is where we shake hands while I say that I promise that he will not receive injections, belowe belowe.  That makes it a more sincere promise according to Boeta.

On the way to hospital I received a message from Lizbé, my cousin.  Boeta and Carien call her Zippie and I just love that name.  It “feels” right for her – bubbly, smiling and always there.  She offered to sit with Boeta so that I could get out.  I was already typing the “thanks for offering but I’m OK” reply when I realised that I’m not OK and that this would be exactly what I need.  So I graciously accepted.  Aren’t you proud of me?  I am.

Woutertjie was so excited when she showed up.  He loves her and she brought lots of things for them to do.  In the end he didn’t last an hour before he fell asleep – such are the perils of low Hb!

I went off and had coffee with Wouter.  I also saw his new office for the first time since they moved there a month ago… 

Soon after I got back Annie arrived.  Every time that we are in hospital Annie arrives with a bottle of water for me.  Sometimes flavoured, sometimes not but always with love and a hug.  The blood transfusion started at 15:00 (200ml over 4 hours) and when she got there it barely started.  Boeta didn’t want to look at her or speak to her or take the cooldrink she brought. 

10 minutes later, as soon as he hit the 30ml mark, he turned into another child.  He was talking and gesturing at the DVD he was now suddenly interested in.  By 50ml he asked for something to eat.  Imagine my surprise!

I can’t believe how much difference such a little bit of blood makes.  30ml is 6 teaspoons full of blood.

Before the transfusion his Hb was 7.0 and afterwards 10.4 – no wonder Boeta was bouncing off the walls.

His white cells are 1.2 today (neutrophils 0.19) and his platelets 336.  This is a huge increase from two days ago (0.4 and 102).  Gerrit feels that it won’t be high enough for surgery by Friday.  Apparently next week’s chemo will be postponed for a week to allow for the surgery to be done – surgery and chemo in the same week doesn’t mix because it is too much trauma for Boeta’s body to handle.

I asked Gerrit and sister Stoltenkamp why Boeta was still nauseous.  Sister Stoltenkamp smiled and said I should be grateful – it means the chemo is still in his system and fighting the good fight.  Gerrit gave me The Look (The Look means that he would like to say something but that he rather wouldn’t in the interest of professionality and that I should zip the lip immediately – I am intimidated by The Look! :-D) and added that Boeta received extremely potent chemo, in other words, no blooming wonder that he is still nauseous! 

The transfusion only ended at 19:00 and Boeta was running a fever of 38 degrees so he is staying at hospital for the night.  Gerrit seems to think that we would prefer to take Boeta home – I am so grateful that he can stay and be monitored continuously!  I think we confuse the nurses by not being overly eager to leave the hospital.

Until anyone tells me anything different here is what our next couple of days hold:  No surgery this week to allow him to get some strength back.  Surgery during next week.  Chemo and radiation from the week after that.

Tonight I want to nominate Zippie and Annie for my self-invented Angel Awards.  You really were the angels I needed today. 

Lizbé is an ICU nurse and sees lots of families who have to live the hospital life for weeks on end.  She told me today that it is absolutely normal to get tired from living in this twilight zone but that most people only have to do it for a couple of weeks, not more than a year like we have to.  So I can stop feeling like a loser for being as tired as I am.  It’s been bothering me a lot, this excessive tiredness.  But Zippie says it is because my reserves are depleted and I don’t get enough opportunity to replenish them before we head back to hospital.  Thanks Zippie.  I needed to hear that.

Annie is always there or willing to get there at a moment’s notice.  You are the friend everyone should have.

I don’t know what made Lizbé and Annie show up when they did today but in both cases the timing was perfect.  Typical angel behaviour.  Thank you for listening when you got Word to visit.

And strange as it seems, this sudden change in plans today erased all my feelings of being in limbo.  Being intellectually challenged would be nice, but that is not why I took the year off.  I am doing something I’m good at.  I belowe belowe Boeta that he will not get an injection (and in doing so keep him calm), I cuddle Carien whenever she wants to be cuddled (and when she doesn’t want to), I really try to be a good wife to Wouter (and Baby, if you try to contradict me you will be in deep trouble).  And I am a fabulous honorary nurse at hospital. 

My mom says that this journey is like running the Comrades.  We will never make it without accepting water from the supporters on the side of the road.  Now we just have to learn to ask…


4 Responses

  1. Suz ek dink nie jy besef hoe baie mense se lewens aangeraak word deur jou skrywe elke dag nie. Dit klink weird, maar jy inspireer my, jy laat my weer die klein eenvoudige dinge in die lewe waardeer en weet jy, ek dink God sonder jou uit en wys vir ons wat dit is om te GLO en te VERTROU en AAN TE HOU. Ek sal vir jou bid dat jy die krag sal kry om aan te gaan en om kop bo water te hou, om sterk te bly wanneer alles om jou tumble en om positief te bly in hierdie reis. Jy is vir MY ‘n ongelooflike inspirasie, baie lief vir jou. Hanliex

  2. Just wanting to come and say hello, hugs and prayers!!!

  3. Dis ‘n inspirasie om jou blog te volg. Sterkte, dink elke dag aan julle!

  4. Your mom is very wise: there are many supporters who are willing to give you guys the “water”!!! They just need to be told when, so, make use of that.
    I am glad that WE can make a difference to your lives as well, because you are such an inspiration to all of us (all of us reading the blog) because you travel this path with strength and determination.
    Keep going! And we will keep being there with you: beside you or behind you but never far away that you cannot see us!

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