Day 6

For the record, prayer works.  But then, we should know that by now.

This morning on my way to hospital I begged God to bless Woutertjie with His healing power.  I’ve been lax the last while.  Boeta has been doing well, making it easy to “exclude” God from our day to day business.

And you know what?  Today has been miraculous. 

Firstly I met Gerrit on my way in.  We chatted for a bit.  I’ve been feeling very guilty for “allowing” Boeta to get sick.  Why didn’t I keep him and Carien apart as soon as she started developing a cold?  Why didn’t I keep Boeta masked the whole time at home?  And Cristina has been fueling my guilt trip even more.  She has read me the riot act about neutropenia and prevention of infection. 

Gerrit derailed my guilt trip train completely.  He decided that I should blame him, since I informed him when Carien started getting ill and he could’ve done something about it then already.  So officially I am laying the blame at his feet.  It is good that we aren’t American.  Gerrit’s parting shot was:  “So sue me!” 😀

Today Boeta is off anti-nausea meds, off fever meds and he hasn’t been nauseous and his temperature has started dropping this morning.  By tonight he was just about fever-free.  What a blessing!

His rash has also started disappearing, although his cheeks, arms and legs are still covered.  Since his platelets are lowish (46) he has pinprick marks all over his face and scalp from coughing.  It is freaky to think that coughing can cause bleeding…  But his coughing is a lot better, his nose is less runny and here is the clincher – today’s nasal wash is negative for RSV!  This is wonderful news as it means that the virus is now out of his system. 

After 5 days of GCSF boosters Boeta’s white cell count is 0.4 today.  It is starting to climb.  His Hb is low though (6.8) and he will get a blood transfusion tomorrow.  It will be his 6th. 

By tonight Boeta had eaten (shock, horror! :-D) almost 2 hotdog buns with tomato sauce.  He asked for “so ‘n ronde bans met matiesous”.  It is a good thing I am the mommy otherwise I wouldn’t have understood what exactly he wanted!  I have to add that he got some tough love today.  The nursing staff are making “sterk stem” with him, telling him to eat or else.  So he is eating.  I am the good cop in all of this, choosing his side and begging him to eat so we won’t get into trouble with the nurses.  So far it is working and that is all that matters.

I have to brag with Carien now.  2 days ago my mom and Carien (1y9m)were stuck outside their automatic gate without a remote.  So my mom lifted Carien through the gate and told her to go and fetch the remote in the house.  Lo and behold, she dodged the dogs and the next thing the gate opened for my mom.  Carien didn’t even bother to bring the remote to the gate, she simply opened the gate from inside the house! 😀 😀  That child is too smart for her age.

She misses Boeta something terrible.  She is constantly asking about him or telling us that he is in hospital.  My poor baby.  She adores him and is feeling very lost without someone to copy.

But we are good.  Very good.

With any luck we may get out of hospital before Boeta’s 5 day chemo starts in a week’s time! 🙂

And breathe …

It looks like chicken pox, it acts like chicken pox, it feels like chicken pox.  But it isn’t chicken pox!  😀  We are so blessed.  Thank you for every prayer.  Once again they have been answered.

Gerrit (the paediatrician) gave some multi-syllable word to describe what it is.  He is trying to sound smart.  He said that, by the way!  So we are all at home again. I love being bothered by two single minded toddlers.  It feels like home.

On a different note, how do children manage to cut adults down to size so easily?  You know what I’m talking about.  With a few seemingly random words they manage to slice cleanly through your self-confidence, your self-worth and usually call a spade a spade.

This past week my children discovered Joseph and the Amazing Technicolour Dreamcoat.  My mom bought the DVD and the kids have been watching it repeatedly. 

This morning on the way to hospital Woutertjie wanted me to sing bits from the musical.  We started off well.  He wanted to hear a bit of “Joseph’s daddy” so we sang two verses from “Jacob & sons”.  Then he wanted the song of Joseph in jail so we did a couple of lines of “Close every door to me”. 

And then he wanted me to sing the king’s song.  Pharoah sings about his dreams in Elvis style.  I was about two lines into my energetic Elvis impersonation when it became too much for Woutertjie.  So with typical offspring-honesty he told me: “Mommy, I think you should stop singing now and then we can just drive.”

Ouch.

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*

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!

The way of things

The one thing I just don’t understand is Life.  Well, there are a lot of things I don’t understand (like why vinegar socks are supposed to help for fever) but one of them is life.  Every day I plan on writing a upbeat post and every day before I get to write it, something happens to make me forget about the upbeat post.  And then I write long, rambling piece trying to get to grips with whatever happened.

Today the same sequence of events took place.  I was on the verge of writing a minute by minute runthrough of the day and then I decided not to.  Can you spot the rebellion?  I am very proud of myself.  Whoo hoo!  I’m a rebel!  I fail to follow my own rules!

Yip, I’m a sad case.  I know.

So today I am not going to tell you that the radiation people phoned this afternoon to say that they want to do a “before” scan of Boeta for planning purposes.  I am also not going to tell you that the play therapist and I spoke and agree that there is no way that he is going to lie still for it.  And finally I am not going to tell you that he will probably need to get anaesthetic for the scan on Friday. 

I am going to tell you about the good things.

Boeta is doing so well.  We have our pre-cancer son back this week.  He is raucous, wild and adorable.  And he never stops eating.  I caught him on the loo today eating a bag of chips.  He eats breakfast at our house, then he has breakfast at my parents’ house, then he starts snacking until lunch…  I love every moment of it. 

I am not looking forward to next week and Boeta being sick again.  Please pray that he deals well with the adjustment to being in hospital on a drip again – it is very hard for him to keep still for so long.  According to the doctors the side-effects of the new drug is severe – please pray that Boeta will not have any.  Also please keep Wouter and I in your prayers.  It is hard to see our “healthy” son running around knowing that we are going to take him to be poisoned again.  I know it is for the greater good and all but I would prefer if this whole thing could just end now.

Carien is doing so well.  She is 1y7m and is very busy potty training.  If you saw her in action you will see that she is indeed very busy and not just busy.  This child of ours!  She is very eager to do her thing on the potty but not so eager to do it every single time.  Life awaits!  There are so many other things to do! 

Today she is driving me up the walls.  She is very much a mommy’s girl at the best of times but today you’d think we are siamese.  Oh well, tomorrow will be here soon enough.

Right now I have to try and disentangle myself from Carien’s clutches and start baking Boeta’s birthday cake.  For the 3D effect I will need cake that is a bit on the older side.  “Firm” sounds so much better than 3 days old, don’t you think?

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…

Separation of the sexes

If you told me 3 months ago that Wouter and I would willingly spend the night in two separate houses I wouldn’t have believed you.  And if you added that we would divide the children between us I would’ve worried about your sanity.

And yet, Carien and I spent last night at my parents’ house while W & w spent the night at our house. 

Carien wasn’t a happy camper last night.  She was feverish and just plain miserable.  But when this morning dawned that was all forgotten.  She woke me up by pulling my eyelids open and when I blinked into consciousness she gave me a big soppy lippy kiss.  It was a good way to wake up.

Dr Stefan was right – Carien’s tummy was very upset until this morning.  It seemed to get better by late morning and she was OK by afternoon.  So we were reintroduced to each other.  She is still not in peak condition and went to bed half an hour earlier than usual.  Very unusual for her.

Boeta is in top form.  He is very pale (I expect he is going to need a blood transfusion sooner rather than later) but insists on climbing on top of the coffee table to watch his DVDs.  So he seems fine.  Cristina told me to watch out for changes in his personality as an indication of something being off.  It is actually a very handy parameter.

The members of the church band that Wouter is involved in have given a voucher for a couples massage to us.  How divine!  They know Wouter very well and realised that he is sorely overdue for some relaxation.  And now I am included in the package.  I looove beauty treatments.  I don’t go often though.  So I am going to make the most of this!  Thank you Antionette and the gang!

PS:  Of course after writing about how well he is doing we now have the unnerving scenario that Boeta’s temperature has gone from 37.5 to 37.7 in the last 2 or 3 hours.  I spoke to the sister at the hospital and if it reaches 38 we will be off to the ward immediately.  So please start praying that we don’t have to go to hospital tonight!