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.

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

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.

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!

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…

Day 3 of 5 (take 2)

Yes, I didn’t update yesterday.  I decided to be not-dependable and rebelious.  Actually I couldn’t think of anything interesting to post.  But of course I will never admit to that.  So please indulge me and think that I was a rebel.

I’ve always wanted to be a rebel but I’ve never been able to switch of my inborn sense of responsibility for long enough to do it properly.  Like Tif once said, before I do something irresponsible I first check that

1.  it isn’t unlawful

2.  no one will get hurt

3.  no one will know

4.  emergency backup plans are created

5.  if #1 -3 fail, there will not be unacceptable consequences.

Only once all 5 criteria have been met do I go through with my rebellion, feeling wild and spontaneous.  Yeah, I’m a sad case.

Boeta is doing very well although the chemo nausea is getting to him.  It seems that the side-effects are cumulative.  After every chemo they happen faster and more severe.  His blood counts go lower for longer, the nausea sets in earlier and yet none of that is enough to keep him down. 

For some reason, when we are at home he prefers proper food but as soon as we get to hospital he refuses food and demands only junk.  And biltong.  So tomorrow the dietitian is coming to see us.  I really don’t know what she is going to do to help.  There is a big difference between knowing what he should get and getting it into him.  I know that chips and chocolate and biltong is not a balanced diet.  Not even when he tops it off with cream soda (hey it should count as greens).  But if it is all I can get him to eat, what am I supposed to do?  So I will wait for her, I will listen to what she has to say and I will definately ask her how she wants me to get him to eat something he doesn’t want to eat.  I will keep you posted.

Boeta is doing very well considering that he started the day by vomiting all over his bed.  The anti-nausea medicine is doing its job and he is currenly playing Emily-rescues-Thomas with his trainset.  He has such a train infatuation at the moment!  If it was me I would be lying in bed pitying myself but he has too many stories to play.  We even practiced writing his name this morning.  He already knows some letters and I decided that I may as well start teaching him more.  He lost interest after 5 minutes but we’ll try again tomorrow.