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

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?

Looking back

It has taken me a long time to understand and accept the scope of the miracle that God has bestowed upon us. 

Yesterday while I was waiting for Woutertjie to wake up following his scan Cristina came past and we spent quite some time chatting.  Me sitting in the hospital chair with Boeta curled up in my arms sleeping the sleep of innocents. 

She says that she has never seen results like Boeta’s.  And for this reason she is now more worried about him than at the start of treatment – back then there was no risk.  He was going to die without treatment and she could basically try anything.  Now he is “healthy” in that he has no clinical signs of cancer.  Suddenly the risks are huge. 

Chemotherapy means that you poison the whole to kill the bits.  How far should you go about poisoning a healthy whole to kill bits that may or may not be there?  Chemo can lead to different cancers later in life.  It is a catch-22 of the highest quality.  And all we can do is pray for wisdom for the doctors.  So far they have reconsidered many parts of the treatment.  Boeta isn’t getting the operation that is an integral part of the treatment, for example.  Thank God for granting wisdom.

Cristina said yesterday that she didn’t expect Boeta to survive to celebrate his 4th birthday.  And here we are, done with his party and celebrating his birthday tomorrow.  He is doing well and had lots of fun with his friends.  He is (once again) eating like there is no tomorrow.  He gained more than 1.5kg in 10 days! 😀

I’ve been wondering for a long time, since this started in fact, why this happened to us.  And I’ve had a feeling that God may be preparing me / us for something special.  Yesterday in hospital I overheard the family of a 12 year old girl talking.  She was diagnosed with an aggressive brain tumour on Tuesday.  On a whim I walked over and shared our story with them.  I think it did them good to hear it but it definitely did me good to tell it.  They are from a town about 20 minutes from where I finished school and they know my parents.  In the end I gave them a crash course on cancer, chemo and hospital life.  I really wish there was someone around when Woutertjie was diagnosed to tell me that I will sleep again (once the body gets too tired to be overridden by worrying), that I will start to understand the medical terms being thrown around and that life will go on.  The closest person I had was Lea, whom I met online and who has been a sanity saver more than once.  She advised me to start a blog.  There is no way I could’ve made it this far with any semblance of sanity (no comment from the peanut gallery about my perceived sanity please) if I didn’t unload here.

Please spare a prayer for this beautiful girl.  I have to find out from her parents if I may mention her name here.  She needs all the prayers she can get.

The Bald and the Beautiful

What an eventful day!  In this episode you will hear about my day off, Boeta’s chemo, Carien’s paed check-up, Wouter’s coffee date, my sister’s fish and how small the world is.

I told you it was an eventful day.

I got up at 6 this morning in an attempt to be at hospital for the early morning check-ups.  I’ve missed a couple this week due to my wonderful father-in-law’s overnight visits.  When Wouter stays over I have to be at hospital early because he has to get to work.  But when Oupa Skippie stays over I can take it slow in the morning.  What bliss!

Anyway, I specifically wanted to see the oncologist, Dr Cristina Stefan, to hear what she thought.  Needless to say she didn’t do rounds today.  The paediatrician seems satisfied with Woutertjie’s progress – apparently Boeta’s liver feels smaller.  That is of course no indication of what is going on inside but it is good enough for me.  I am still praying that the tumour in his heart will shrivel up and disappear by the time the reassessment is done.  Please join me in prayer.

To get back to my point once again (I am the only person I know who can derail my own train of thought), I got up early and Boeta and I spent the morning reading stories in bed.  Bliss!  My mom brought Carien for her check-up.  My mom then kept Boeta company (and tricked him into eating some more) while Carien and I went to Dr De Villiers’ rooms.

The last time that Gerrit (the paed) saw Carien was at her 6 weeks check.  I figured that an almost-18-month check would be in order.  As I expected he pronounced her to be absolutely perfect.  He forgot to add that she is the prettiest, funniest, most talented toddler he has seen since forever but I don’t blame him.  Her dazzling personality can be very distracting.

Following her check-up Carien and I went shopping.  More accurately we went to the bead shop so that I can make some more dummy chains, the post office to pick up a package for Boeta (thanks Sally – he loves it!) and we topped up Boeta’s junk food supplies.  It was the nicest, most relaxing 2 hours this week.  It is wonderful to see that the world outside Boeta’s hospital room walls still go ahead.

Boeta is coping so well with the chemo.  We are aware that the side-effects of the current session is still looming ahead but so far, aside from his near complete loss of appetite, Woutertjie is doing very well.  He has been on a drip and confined to his room (the other children are here because they have   g e r m s  ) since Tuesday morning and yet he remains happy and easygoing.  A huge part of this is due to the fabulous staff.  The nurses and support staff are fabulous.  Each and every one of them.  They go out of their way to entertain and indulge Boeta and we appreciate them so much.

Wouter went for a full check-up at our GP today.  I made the appointment, told her what I was concerned about and told him to show up.  So he is now checked, medicated and even better than normal.  I love him so much.  After his day at work he met up with his brother for coffee.  I don’t know what they discussed.  I will find out.  I am too nosey to not find out!

My baby sister came by this afternoon.  Tiesies is now the proud owner of fish.  She received two from her boyfriend, What’s-his-face, and then bought two more.  One of the new ones is apparently butt ugly but she felt guilty because “if she didn’t buy it, who would?”.  I quote: “It is so ugly no one would want it.  And then it would grow old in the pet shop. (pause) Not that it would be bad to grow old in the pet shop. (long pause) It would grow old.”

Her previous attempts at fish keeping weren’t successful.  The fishes are now sleeping with the fishes, if you know what I mean.

Finally we get to the smallness of the world.  One of the nurses, Natasha, told me tonight that a friend of hers told her to pray for a little boy with cancer.  She heard from a friend of a friend of a friend.  No surprise, the litte boy is ours.  The prayer has come full circle.  We are so grateful for everyone’s prayers.

Have a good weekend!

Day 3 of 5

Boeta passed his pre-inspection and chemo may go ahead today.

Every morning he is checked out by both the paediatrician and the oncologist to make sure he is healthy enough to receive the day’s chemo.  And thank God, every day until now he has received the all clear.  So as soon as the chemo drugs arrive from the oncology unit he will start.  He is on a drip 24 hours anyway so it doesn’t bother him.  He is treating the tubes like extra arms – he isn’t even aware of them.

This morning he refused breakfast, apart from his (double portion) bacon.  He finished it and demanded more.  And when the hospital couldn’t deliver quickly enough he insisted that we phone my mother and tell her to bring some from home.  So any time now Ouma should arrive with his bacon.  Lots and lots of it because that is what he asked for and that is what he will get!  Grandparents.  *shakes head*

I asked my mom a while ago why she allows my children to do things that I wasn’t allowed to do.  She gave me The Look and said simply:  “You are my child.  I had to raise you well.  They are my grandchildren.  You have to raise them well.”  I couldn’t argue with the logic.

Wouter’s father, aka Oupa Skippie (Grandfather Boat because he has a rubberduck), has been staying with Boeta the last two nights.  They both love it!  When we leave they are usually sitting flat on the floor playing.  Ouma Skattie (Grandmother Dear) is looking after Carien today because my dad is going for an eye operation.  I think they are going to have lots of fun.  Carien is such a girly girl and loves drawing, colouring and anything pretty.  What do people without attentive family and friends do?  I don’t even want to think about how we would’ve struggled.  Thank you to all the grandparents, uncles, aunts, cousins, friends and supporters.

Boeta has now decided that he wants pink (strawberry flavoured) milk.  So I am off to find some.  Because chocolate milk is no good when you need to have pink.  Any bets that he will not want it by the time I get back? 🙂

Boeta is in isolation for the first time

The oncologist, Dr Cristina Stefan, came by.  Boeta’s white blood count is low enough to be considered zero.  Based on the results he should’ve picked up an infection by now but he is healthy as a horse at the moment.  Just another miracle.

We expected that his counts would drop as it is one of the effects of the chemo.  The low-point is usually between 10 and 14 days post-treatment.   Today is the 10th day.  So in 4 days time his counts should start to increase again.  The oncologist is quite pleased that his white cell count dropped so much.  It is an indication that the chemo is working well.  Now we just have to keep him healthy for the next round on Tuesday.  Please pray with us!

I mentioned to Dr Stefan that Boeta’s abdomen seems to be a lot flatter.  She looked at me, looked away, looked at me again and said that she doesn’t want to say too much based on purely feeling his stomach but that the tumour feels smaller.  This is purely based on how his abdomen feels.  Lots of things could be going on inside and we will only know during the week of 17 March when the re-assessment scans are done.  I believe that God is good and great and will heal our child completely.  Praise our mighty God for carrying us this far and for sending amazing doctors, nurses, supporters and friends our way.