Mixed emotions

Today was one of those days again.  High highs and low lows.  How many times do I have to repeat it?  I do not do rollercoasters.  Emotional or otherwise.

Woutertjie received no radiation on Monday because the doctors were worried that he might still be dehydrated from the weekend.  Yesterday he received his 22nd dose.  It didn’t go as well as the first 20 times though.  On Friday he started gagging as soon as the anaesthetic was injected but Elizna thought that it may have been too much saliva or something innocent like that.  Yesterday, thank God, they came prepared for something similar. 

As soon as the anaesthetic hit him Woutertjie started gagging and turned blue.  Elizna said afterwards that she suspects he has oesophagitis, a bit of reflux and lots of radiation-related irritation of his oesophagus and stomach, causing his larynx to go into spasm to protect his lungs from the stomach contents that pushes up.  Or something like that.  I’m just the mommy.  I can’t be expected to remember all the detail.  Sue me.

Either way, I haven’t seen Elizna and Nici work so quickly before.  I’ve never seen anyone literally turn blue before and I hope I never have to see it ever again.  It is very disturbing.  They sorted him out quickly and the rest of the session went smoothly. 

Afterwards Cristina (oncologist), Gerrit (paediatrician), Elizna (anaethetist) and Dr Jacobs (radiation oncologist) spent lots of time to-ing and fro-ing, trying to decide where to now.  For now he will not receive any more radiation this week and I am waiting to hear from Cristina whether he will receive any more at all.  The radiation is doing him no favours.  He is one very sick little boy at the moment.  And face it, there aren’t any tumours.  This makes it very difficult.  If there are tumours you can look at them to see if they are responding.  If there aren’t you are flying blind.

Woutertjie is struggling at the moment.  He hasn’t been eating at all since before the weekend.  A good day has him eating a spoonful of yoghurt and 4 jelly tots a day.  He weighed 19.1kg when he was diagnosed the 24th of December.  When radiation started 6 weeks ago he weighed about 17.5kg.  He was 16kg on Sunday and 15.4kg today.  That is major weight loss.  He has been on TPN (total parenteral nutrition) since Monday evening.  That means that he gets a milky mixture of all the nutrition he needs into his drip.  He managed to drink about 30ml of Energade this afternoon and hasn’t vomited since yesterday, so I have firm belief that he will start getting better soon now that the radiation has stopped.

Why did no one tell me that radiation is this bad?  My little fighter who didn’t lie down in the middle of chemo is wasting away.  He looks like a broken bird.  He was born at 4.2kg and has always been tall and big and strong.  Within 2 weeks he has gone from chemo-skinny to skeletal.  I can’t take it.  It is going to break me.

The high?  We are probably done with radiation. 

The low?  Here are the pictures.  See for yourself.

25 May 2006 - 1 year and 1 month old

25 May 2006 - 1 year and 1 month old

9 February 2008

9 February 2008

 

18 November 2008 - Still an innocent baby

18 November 2008 - Still an innocent baby - a month later he was diagnosed

 

29 December 2008 - 5 days after diagnosis and still naive and innocent

29 December 2008 - 5 days after diagnosis and still naive and innocent

19 January 2009 - 2 weeks after the start of chemo - loosing hair, weight and innocence

19 January 2009 - 2 weeks after the start of chemo - loosing hair, weight and innocence

 

12 May 2009

12 May 2009

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On sucking it up

So after a very emotional 24 hours of feeling very sorry for myself I am back.  Meaning I am back. 

I don’t feel comfortable feeling sorry for myself even though I do it very well (if I have to say that myself).  By nature (and by drama queen personality) I am more of an optimist.  And after all, pessimism and drama queening don’t mix and I am above all a drama queen.

So as of now, until my next meltdown, I am back and “making normal”.

Today was a good day.  My middle and baby sisters were both here today.  It really made Carien’s day because she is infatuated with my baby sister and my middle sister’s son, Adriaan.  He is 3 months younger than she is and she adores him.  She calls him Ada and puts up quite a scene when she wants him here now and he isn’t.  Someone needs to explain to her that he lives about 100km from here on the other side of the mountain.

It was the CANSA shavathon and we had a family outing to shave or spray.  My mom (who wouldn’t know what to do with a facebook account even if she had one), Chrismari (aka Tiesies), Carien, Adriaan and I had our hair sprayed.  Berno (Lielie’s husband) had a shave and a spray.  Lielie was at a proper hair appointment when we took the plunge.  Chicken! LOL!

Wouter is already shaving his hair in solidarity with Boeta so he had a scalp spray and I wrote “CAN” on the back of his head.  Do you remember the ad with the tagline “cancer can be beaten” with the guy with “can” shaved into his hair?  Wouter did the hairless impression of that. 

My favourite bit of the day was when Tiesies and I decided that Berno couldn’t have a uniform shave.  Oh no.  We helped to shave his hair and gave him a mohawk.  He is soooo not the mohawk type.  Especially not the pink mohawk with green back-and-sides type.  He was such a good sport even though he knew that Lielie would have a moment. 

Lielie has lots of moments.  Compared to her I don’t qualify for drama princess or even drama lady-in-waiting.  She can out-drama me any day.  And added to that Lielie is very gullible.  So when Berno told her that he will keep his mohawk she believed him.  Because that is what Lielie does.  We love her.

She will probably flap her hands at me for telling this story but I can’t resist.  A while ago they went on holiday and Lielie was going to fly for the first time ever.  She was very excited about it.  The morning of the flight she phoned me with that tone in her voice.  The tone that says that she just heard something that simply can’t be true, can it?

Berno told her that in order to plan for the flight not only your baggage, but you yourself are weighed.  In public.  For everyone to see.  Compulsory, because after all, they need to know how heavy the plane is going to be.  Me being me, I did not disillusion her and tried to explain that she can angle her body to be in front of the scale readout so that only some people will be able to see.  Lielie very nearly called off the trip.  She got soooo worked up!  It was fun.  And because we love her we only let her steam for an hour or two before telling the truth.  We really do love her.

We are doing well today.  Boeta is still in isolation but strangely it bothers him less than Carien.  She gets very aggro after a day at home and demands to go to my parents during the day.  Oh the rejection!  Of course my parents are very chuffed.

So that was today.  Will let you know how tomorrow goes.  Boeta got his booster today (Wouter and Tiesies took him) and will get another tomorrow and then on Monday we will start with chemo again.  Provided that his cell counts are high enough so you know what we need – start praying.  We don’t want to delay chemo.

And in case you are wondering, the start day is Monday because it is a 5 day course and it is difficult to get the chemo mixed over the weekend. 

Wouter’s parents have already planned their week so that his father can sleep over at the hospital.  I wanted to put their facebook link up but they don’t have any pictures loaded so that you can see what they look like.  Skimp, skimp, ma!

See, I really am sucking it up and I’m feeling so much better than yesterday.  Thank you for commenting, praying and being there for us.

The Panorama Barbershop opened yesterday

For the first time in history there was a multiple hair shaving in Panorama’s paediatric ward. 

Yesterday I started with a long winded, roundabout story to prepare Boeta for having his remaining hair cut and eventually going bald.  I told him that Wouter (daddy) was unhappy with his own hair because he had to constantly wash it and it was falling out and being in his way and he was planning on cutting it all off.  And lo and behold, Boeta interrupted my tale by saying: “Yes, and then daddy can cut my hair off as well.”

No issues, no questions, just a statement.  Aren’t children amazing? 

The night before (Sunday night) Woutertjie repeatedly told Wouter’s dad that his hair was breaking off and that it was bothering him because it got in his mouth and nose.  He really hates hair.  Now, after the barbershop attempt he looks like a mouse got hold of him – some patches are completely bald from all the “breaking hair” and some still has tufts of hair left over. 

I didn’t think seeing him without hair would bother me.  After all it is only hair.  But this morning when I got to hospital and saw him through the window to his room he looked so small and so bald and so sick.  Why does one unconsciously equate hair with health?  I never knew I did. 

Fortunately no-one told him that he is sick.  He is watching the Bee Movie at the moment, lazying on his bed.  If you didn’t know him you’d think he was perfectly fine.  If you knew him you would know that there is no way that he would lie and sit around the whole day.  He used to be very active, very outdoorsy and very dirty.  He used to be clean for about 2 minutes every day – the exact time between getting out of the bath and getting dressed.  You know how a dog rolls in the dust after a bath to “find itself” again?  That’s our son.  Well, the day will come again when he is outdoors and dirty.  For now he smells like hospital.

Hair, hair, everywhere

It has begun.  Today I noticed hair on Boeta’s pillow for the first time.  And when I looked I realised it is on his pillow, on his sheets, on his clothes, everywhere.

The upside is that he won’t have to bother with his greatest hate anymore: washing hair.

For some reason Boeta has never taken to washing hair.  From birth.  Before he was old enough to know whether he liked something or not he already knew that he didn’t like washing hair.  It doesn’t help that he has a lot of hair.  He had only fluff until he was well over 1 year old.  When his hair finally started growing it went wild.  But then, with Wouter and I as parents it isn’t that surprising.  We both have daily hair issues, all of it involving taming the lot.

In a way I am grateful that he is losing his hair so soon into the treatment.  The chemo is definitely affecting his body and therefore should do the same to the tumour.  I wish I could pull the tumour bit by bit from his body like I pull out his hair.  Everytime I run my fingers through his hair I come away with a handful.  And while I am grateful that the chemo is working it feels like he is losing his innocence hair by hair.  No 3 year old should have to be constantly aware of the tube coming out of his chest, the drip tubes connected to it, the whole everything involved in living in a hospital.

But the 3 year old in question is too busy playing, talking and charming the nurses to be bothered with his mother’s issues.  And I’m not about to introduce him to mine.  So we are “making normal” and soldiering on.