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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Anaesthesia & radiation in pictures

Be warned – there are loads of photos in this post.  I can’t tell you what it is like to have to go through this every day but I can try and show you.  Thank you to each and every person in these photos for the role you are playing in our lives.  The photos were taken over two days to allow me to get all the detail.  So if the clothes don’t match, that is why.

Note to self: never plan

I’ve always been a planner.  I thrive on predictability.  Most people don’t know this because I don’t keep a diary or dayplanner or anything like that.  But I’ve got it all up here *taps head*.  Wouter has tried to convert me to project planning software but after many years he had to admit that I don’t need software.  I’m doing pretty well on my own.

This year is teaching me to be adaptable.  In a big way.

Woutertjie has been very nauseous the last few days, with the frequency and intensity of vomiting increasing daily.  The Zofran (ondansetron) isn’t working any more.  This morning even I could see that he was dehydrating.  The skin on his stomach was “soft” and “wrinkly”.  So we went to hospital a bit earlier than usual and me being me, I told the nurses that he needed fluid.  No asking, just telling.  It is a good thing they know and love me! 😀  Gerrit came to have a look and agreed with my diagnosis and recommendation.  See?  I could be a paediatrician.

He received 600ml of half-DD (saline with dextrose – a type of sugar) and 200ml of chemo by the time he went for radiation and didn’t urinate once.  He really needed fluid.  Cristina changed his anti-nausea drugs and it seems like he is feeling better now.

Gerrit recommended and we agreed that it would be the prudent thing to do to keep Boeta in hospital overnight on a drip.  This week he is receiving chemo, radiation and anaesthetic every single day.  One of these would be enough to flatten an adult.  All three together?  Eish.  It is a lot better for him to keep hydrated and to actually eat and digest something.  He currently weighs 16kg.  He was diagnosed on 19kg.  He has dropped about 15% of his body weight and he wasn’t chubby to start with.  I really looked at him yesterday as I was dressing him.  His is skin and bones.   His ribs and backbone are clearly visible.  His arms look fragile-thin.  His knees are huge bumps on his tiny legs.  He looks sick.

At least he seemed to want to make up for lost kilojoules now that he is feeling less nausesous.  He had a small packet of chips and a small container of yoghurt by the time I left tonight.  And he seemed to be keeping it in.  This is a huge improvement.

Next week and the week after he is having a break from chemo.  He is continuing with radiation though but will finish his sessions the week after next.  And the week after that we start with the next block of chemo.  It will be the same that he received right in the beginning.  He wasn’t as nauseous on that so we are hoping that he will pick up some weight then.  Please carry us in your prayers for the next days and weeks.  Once the radiation is done we will have reached a huge milestone.  He has 9 sessions left.

13/28 and we are home!

There are some things that I’ve wanted for years but no one ever gifted me with it.  One of them is a set of salad spoons and the other a proper pancake pan.  Let me add that I never even looked to buy it for myself because it was fun to see how long I would not have it and still get by.

Imagine my delight when I received both of the above for Christmas and my birthday last year.  Actually, Christmas and my birthday (on Christmas Day) are a bit of a blur as Boeta was diagnosed on the 24th and we rushed him to hospital on the 25th with fever and unresponsive.  But now that things have settled I am delighted!

I’ve used the salad spoons before but tonight I used the pancake pan for the first time.  Oh my word.  It is so much easier with a light, thin-bottomed pan!  I should’ve bought one long ago.  Now I just need another one to speed up the baking…..  Any bets on how many years will pass before I get one? 😀

The day off from radiation and the different nausea meds they gave him really did the trick.  Boeta is feeling so much better!  As he stopped vomiting we were sent home on Friday evening.  Boeta has discovered toasted cheese sandwiches and Fanta Grape.  Needless to say his diet is very predictable at this stage.

The most amazing thing happened yesterday.  Since the start of this whole journey Boeta had a thing against scans / x-rays /  radiation machines and the people who operate it.  In particular he hated the “Buzz Lightyear spaceship” (the radiation machine) which is why he has to get anaesthetic every time.  He wouldn’t even go near the corridor leading to that unit.  Yesterday we were taking a leisurely stroll through the hospital, we had tea in the cafeteria, we watched the Kois in the fish pond and then I asked if he wanted to go and visit the “tannies” at the Buzz Lightyear spaceship.  And he said yes.  I’ve been asking the same question for weeks in an attempt to get him to get him to face his fear but he usually screams as soon as I suggest it.  I started in that direction (he was taking it easy in a wheelchair) but expected him to change his mind at any time. 

We went through the doors leading to the corridor.  And he didn’t stop me.

We walked all the way down the corridor.  And he didn’t stop me.  In fact, it slopes downhill and he kept on urging me to let go of the chair so that he could go fast like Lightning McQueen. *insert rolling eyes here*

We even met Elizna, the anaethetist and Nici, the right-hand nurse on the way.  He hugged them, told them looooong stories and simply was having a good time.  He never mentioned the “white medicine” once. 

I still didn’t think he would actually go into the radiation unit.  My son astounded me and all the staff.  We went to right outside the radiation chamber and he had loads of fun chatting to the radiotherapists who usually only see him when he is anaethetised.  He also loved watching the other patients receiving radiation on the monitors.  And he was Alex the lion and chased Marileze (the radiotherapist) who was Marty the zebra (refer the movie Madagascar) up and down.  I had to drag him away. 

Later he received his anaesthetic and radiation and woke up with a big, drugged smile.  He seems to have made peace with the white medicine and the radiation.  I am so grateful.  Dealing with his fear has been very hard on me and very hard on him.  I’ve prayed so long for this and I am so grateful!

12/28

One more down.

Turns out it is no wonder that Woutertjie is having a combination of explosive vomiting and expressive diarrhoea. 

The side-effects of radiation (radiation sickness) are vomiting and diarrhoea.

The side-effects of the chemo are vomiting and diarrhoea.

The side-effect of the anaesthetic is vomiting.

And a side-effect of dehydration is nausea.

Wouter mentioned that it is less of a vicious circle and more of a vicious spiral, where things only go downhill.

Between the paediatrician, oncologist and aneathetist they have now changed his medication to see if they can manage to control his symptoms better.  Until it is better controlled he is staying in hospital on a drip to keep him hydrated.

So tonight Wouter’s dad is sleeping over in hospital with Boeta.  They love each other to bits.  And it means that Wouter can get some sleep.  He stayed over at hospital last night.  Note that I used the word “stayed” and not “slept”.  When I arrived at hospital this morning Boeta and I went for a walk about in hospital and Wouter had his sleep for the night – 1.5 hours.  And then he went to work.  I don’t know how much work he got done today but if he didn’t fall asleep on his computer it would be a superhuman feat in my books!

I need to give you an example of how much I love my husband.  Today my mom sat with Boeta for a bit so that I could get some air.  I went to Wouter’s office and made him some coffee in an attempt to wake him up.  His response?  “You are being nice to me.  You are confusing me.”  I love him so much, I didn’t assault him.  Aren’t I the bestest wife in the world?

A day of firsts

Today was novel in many ways. 

 

1.  For the first time we are in a general ward.  All three the chemo kids were placed in a 4-bed ward out of the way of all the sick kids.  The private rooms are slap bang in the middle between the isolation ward (gastro, encephalitis, etc) and the “normal” germ wards.  Since the paediatric ward is chock-full at the moment it seemed the prudent thing to do.

This means that 3 boys aged 4-and-a-bit, 4-exactly and 3-and-a-half are sharing a room.  Oh my shattered nerves.  They all have Broviac lines (permanent drip lines) and are all used to extended chemo sessions.  But until now they haven’t met because they were always kept in isolation from everyone else.

They had so much fun.  When the time arrived for them to go on their drips the nurses had to place their drip stands in opposite corners of the room to keep them from getting snagged in each other’s lines.  They were counting the seconds until they were let loose.

 

1.  Boeta received his first radiation today.  He had general anaesthetic again since he is very scared of the machines.  He has to get a total of 33 daily treatments and if he doesn’t learn to lie still for it he will have to get general for every one. 

The anaethetist, Dr Elizna Basson, is really amazing.  By the time the porter arrived to take Boeta back to his room he was already sitting up and talking.  He wasn’t “all there” by a long shot but by the time we got to the room he was eating salt & vinegar chips and demanded Coke.  This woman knows her stuff!

 

1.  Today was the first session of Boeta’s new chemo drug, Irinotecan.  This is the excessively expensive one.  I heard this morning that Discovery is indeed paying for it.  Thank you God for yet another blessing!

I am quite anxious about how he will react to it as it can have nasty side-effects.  Please pray that Boeta will stay strong.

 

1.  For the first time since chemo started Woutertjie has normal white cell levels.  It was 9.1 this morning.  I am quite shocked! 😀  This shows that after 3 weeks without chemo his body can get things up and running again.  His Hb is still lowish (10) but not close to his all time low of 6.5.  Life is good!

Scan tomorrow

I am drained.  After long discussions it was decided that Boeta shouldn’t go for an attempted scan today but rather get anaesthetic tomorrow.  I fully agree with the reasoning.  He is petrified of the machines and it is very important not to scare him even more.

Tomorrow at 12:00 we need to book in at the hospital and he will be scanned at 14:00.  It is simply to get the coordinates for the radiation that will follow.  They need to pinpoint the areas to aim at.  So why I am so stressed about it?  Because he will receive daily radiation for about a month and he can’t be anaethetised every day.  He needs to learn to lie still on a little bed that he refuses to get close to, nevermind on to.  And we only have a few days before the treatment starts.

I’m starting to get everything ready for Boeta’s birthday party on Saturday.  The thought of his coming birthday upsets me.  It makes me realise that the doctors didn’t think he would survive to see his 4th birthday.  It makes me realise that every day that he is alive is a gift.  It makes me realise that for the rest of his life he will be at risk.  He will have to go for frequent checkups to make sure that the cancer isn’t back.  He may have several medical issues later as a result of the chemo he is getting.

I know that I should be grateful that things are going so well and I am.  But I am scared of the future.  And I am tired of being scared.