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!

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.

11 down, 45 weeks to go

Yes, we are completing the full 56 weeks of treatment.

This morning Wouter and I had a meeting with the paediatric oncologist, the paediatrician, the paediatric surgeon (Dr Daniel Sidler) and the radiologist (Dr Jacobs). What a nice bunch of people! And what a relieved bunch of people following Boeta’s scans.

We were bombarded with info. The CT people claims to see inflammation in the areas where the tumour originated from and has now melted back into. This is very much expected but is so slight that it isn’t visible to the doctors we saw today. So the surgeon is going to have a chat with the CT people.  They will mark the areas on the scans where they see the inflammation to guide him.

As soon as Boeta’s blood counts are OK (I’ll get back to this at the end) he will go for an operation to biopsy any remaining blobs and if necessary, for removal of those blobs. We thought it may be done using cameras but in fact they want to do it the old fashioned way to get a good look at what is going on.   The surgeon will insert clips to mark the point(s) of origin as a guide for the radiation that will follow. At the moment the radiologist doesn’t know where to irradiate because there aren’t any tumours. Can you see me smile?

After Boeta recuperated from the surgery he will start with radiation. This will be daily for at least a month. At the same time he will start with this new type of chemo drug, Irinotecan. This is the very expensive one. According to the oncologist it seems to have severe gastro-intestinal side-effects. There is a full page of what-to-do-as-soon-as-diarrhea-starts in the schedule. As far as Cristina knows, Boeta is the first child to receive this drug in South Africa so we (she) don’t know first-hand what to expect.

According to Gerrit there should be no problem getting medical aid approval for the Irinotecan after Boeta’s excellent response to the treatment so far. This is very good news. I phoned the chemist today to order more anti-nausea meds for Boeta and was told that they couldn’t deliver it – I have to go and pay for it because our medical savings are kaput. We had R8 000-odd at the start of the year. We aren’t even 3 months into the year. Fun times ahead! Fortunately we only have to pay about R2 000 ourselves and after that Discovery pays for everything else. Let me add that we are paying through our noses for our medical cover. But it is worth it when you get shocks like these!

We also saw the paediatric cardiologist today. She was the one who initially picked up that there was a tumour in Boeta’s heart. Today there was nothing, just a beautiful, even, perfect heart. Praise God!

We saw so many hospital staff today who heard about Boeta’s scans from other staff. I never realised how many people in Panorama know about us. And they are all ecstatic about it. Only now are they telling me what Boeta’s chances were originally and it is shocking. One doctor (not ours) reckoned that he had about a month left based on how far his cancer had spread…

Does anyone want to question the power of our Lord?

Finally the blood results. Oh my word. Gerrit phoned tonight and demanded that I sit down before he told me what it was. So far the lowest Woutertjie’s white cell count dropped was 0.3. It is now 0.1. That means that for all intents and purposes he doesn’t have any immunity. Period. And yet he is healthy.

His Hb is 7, which means that he has about half of the oxygen-carrying molecules that he should have and thus only gets about half of what a healthy child would get. And yet he is quite active. Not as much as usual but with permanent nausea and very little oxygen what would you expect?

His platelets are 67. Below 50 bleeding is a risk. So we have to keep him bump and bruise free.

Gerrit actually called his counts life threatening.

So please say a prayer that Boeta’s cells bone marrow starts waking up soon and his counts improve. Surgery can not go ahead if his counts aren’t normal and we want to stick to the schedule as much as possible.

Oh – I saw Tielman, our minister, today while he was having his last session of chemo. He proposed a thanksgiving service for Woutertjie’s miraculous healing. We will let you know when it will be held. It will be for family, friends and strangers who want to get together to give thanks to God. You’d better be there!

Edited to add: I almost forgot to congratulate another pregnant angel in our midst. May you have a fabulous and healthy pregnancy S!

When the cure is worse than the disease

Yesterday I went to our GP to find out if I should get a tetanus vaccination. To her credit, she didn’t laugh too loudly when I explained how I managed to do to myself what I did to myself. And then she agreed that I needed the jab. 

Have you received a tetanus shot?  The doctor told me that it would be a sore, burning injection and that my arm would be sore for at least two days.  What she failed to mention is that it would get progressively worse as time goes by.  When the injection stung a bit, but only a bit, I thought that everyone was exaggerating and that I was going to be different.  I am not different.  My arm is excrutiatingly sore!  Most likely this means that I didn’t need the vaccination as my immune response to the tetanus antigen is very good.  My brother-in-law reminded me of this but that didn’t endear him to me.  He should’ve felt sorry for me.  Yes, I am a drama queen.

Back to our GP.  She was my mom’s GP of choice and so I started going to her too.  Her maiden name was Odendal and my mom called her “Odendaltjie” because (1) it is a term of endearment and she is barely older than I am so she qualifies to be endeared by my mom and (2) my mom is from the generation that doesn’t call doctors by their names.  When Odendaltjie got married her name promptly changed to De Bruintjie.  I call her by her name but it is more fun (and my family knows who I’m talking about) when I refer to her as De Bruintjie.

My family isn’t very big on names.  I suspect that if there weren’t as many family names available (all 4 of us have family names) we would’ve been called Child 1, 2, 3 and 4.

Wouter loves telling the story about our family cats.  Originally we had 2 cats.  One ginger and one white.  Their names were White Cat and Ginger Cat.  Some years later we got another cat.  Since the first two weren’t around anymore his name was Cat.  Cat went on to have kittens (turns out he wasn’t a he after all).  The kittens were name This Kitten, The Other Kitten and Another Kitten.  My folks kept one of them and because he was a tortoise shell he was known as Bontkat (literally colourful cat) while Cat’s name changed to Mommy Cat.  Mommy Cat disappeared aged 117 or something like that.  Meanwhile Bontkat proved that he also wasn’t a he and had kittens.  We currently have one of Bontkat’s children, named Cat. 

So De Bruintjie should be grateful that she has a name at all!

Tonight Wouter and I went to church together for the first time since Woutertjie was diagnosed.  We really needed it.  We are both very stressed about the upcoming scans.  We really, really, really need the tumour out of his heart.  Please pray with us.  And of course what we would like most would be if there was no tumour to be found at all.  God is the Great Healer and it is perfectly within His power.

In a way it is easier on us to not know the date and time of the scan already so we can’t fixate on it.  God knows what is best for His children.  Please pray that He will heal our son completely.

Woutertjie is doing well but is still not eating.  At least he nibbled today and had a bit to drink.  His best friend’s parents dropped his party pack off (of the party he couldn’t attend) and he made quite a dent in that!  He managed to drive Carien to tantrums twice today so I think he is feeling well.

PS:  Currently Bontkat is called Mommy Cat.

Money, money, money

The children are watching Mamma Mia and I started thinking about money or the lack of it.

The hospital and doctor’s bills for Woutertjie’s hospitalisation and treatment are more than R150 000 already.  We are in the 9th week of the 56 week treatment schedule.  You do the math.

From week 13 he will start with a different type of chemo.  It is new, it is state-of-the-art and it costs R35 000 per ampoule. 

Hospitalisation costs more than R2 000 per night.  This does not include the medicines they use, the twice daily doctors’ visits or scans etc.

We are in the wonderfully priviledged position that we are on Discovery’s super-dee-dooper plan.  We used to be on a much cheaper hospital plan but through a complicated set of circumstances ended up on the Classic Comprehensive, costing us in excess of R5 000 per month.  Until now Discovery has covered most of the expenses.  We had to pick up a R2.10 or R5.78 here and there but that is it. 

I was on leave when Woutertjie was diagnosed and never went back to work.  At the moment I still receive my salary but from the end of April I will be on unpaid leave and that will make things interesting…  We are after all a dual income family.  We refuse to worry about it.  God has been so immensely good to us up to now that I can’t image that He will let us go now.  So for now I am a full time mom and nurse and when we plan for one day at hospital and it turns into two (or 10!) I don’t have to think about dealing with a boss and work that is piling up.

Today I heard of another almost-4-year old boy with cancer.  Unlike ours, their medical aid has a limit on oncology.  And a ridiculously low one at that.  So both parents have to work to pay for treatment. 

Did you know that government hospitals charge medical aid rates if you are on medical aid?  So basically you pay private money for state care.  In other words, rather go for private care until your medical aid runs out because that way you’ll at least get proper care for a while.

My heart is breaking for this boy and his family and for all the other children and adults and families out there who doesn’t  have the luxury we have.  This journey is tough enough if you do it in comfort.  No one should have to worry about money while fighting this.  And no mother should have to work while your child needs you.

No one.

No! Mommy! Help me!

Today Boeta’s plasters covering the Broviac line (permanent drip in his chest) were changed again.  I can’t stand it anymore.  He has become scared of plasters because they have to be removed and it hurts.  Now he screams and cries as soon as anyone mentions the word and I have to try and calm him down while the nurses do it as quickly as possible. 

It all started on Christmas Day.  He had to get general (full) anaesthetic for his CT scan on the 24th and they taped the 2 drips to his arms with those wide, white plaster.  From wrist to upperarm.  So on Christmas Day after seeing the oncologist the drips had to be removed and they had to pull off all that plaster.  He was screaming with pain and I had to help calm him down.

The nurses in the paediatric ward have been wonderful with his drips – they put gauze against his skin so the plaster didn’t hurt him.  But now the Broviac needs to be held in place against his chest and they want to change the plasters daily…

Boeta hates being held down.  This is also a new thing – he never minded before.  After a couple of xrays and plasters he now goes ballistic about it.  So I tell him that he can hold onto my hands while they are doing the plaster, meanwhile I grip his hands as tightly as possible to keep him from pulling on the line while trying to fight the nurses off.  It is getting to me in a big way and I just have to suck it up and deal with it.  I don’t want to have to hold my baby down.   I don’t want to have to tell him that it is almost over.  I want him to run around and feel better.  I want him to be healthy.  I want him to be muddy and filthy and tired from chasing the dogs around. 

I don’t want to hear him crying to me for help and I can’t do anything to make it better.