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.

OK, maybe I’m not that bad

Woutertjie’s birthday was on the 5th.  I’ve been threatening to take cake to hospital for the staff since then.  For various reasons (I am too lazy / it is too much work / I don’t feel like it at the moment / I am still too lazy) I haven’t.

To make it even more of a mission, the nursing staff work on an odd schedule.  Their shifts are >12 hours so they work 3 days and are off 2 days or something like that.  This week all the staff rotate through the ward today, tonight, tomorrow and tomorrow night.

So yesterday I got my act together and started baking.  I spent the whole of last night in the kitchen and a good couple of hours this morning as well.  In the end I took a mini-truck-load of food to hospital. 

I baked a chocolate cake (Woutertjie helped me to decorate it), bacon & sundried tomato quiche and made my signature custard slices*.  Then I took the easy way out and baked ready made cheese puffs and bought koeksisters.  Because one should always have both sweet and savoury.

And tonight I repeated the process for tomorrow’s staff.

And you know what?  Even though I spent hours in the kitchen when I would much rather have fallen into bed and slept, I don’t begrudge a moment of it.  In a very small way I could show our appreciation to the women who look after our son day after day.

Now I just have to make something for us as well.  Wouter is feeling neglected. 😀

*Ask anyone who knows me.  Sooner or later, but usually sooner, I will feed you custard slices.  I’m good at making custard slices.  But not very humble about it.

 

PS:  We are at 14/28 – halfway through!

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!

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!

About today

Today I had to convince my son to go for an injection.  The same type that he had yesterday and has to get tomorrow.  Yesterday he was more willing than today.  I am dreading tomorrow.

He knows that the numbing patches I put on his leg beforehand signals imminent pain.  Less pain because of the patches but pain nevertheless.  According to the doctors the bone marrow boosting medicine (GCSF) burns like … like … like something that burns a lot.

And to top it all off we have to go to hospital a second time tomorrow afternoon to see the oncologist who will decide if he needs a 4th injection based on the full blood count that will be done the morning.  So then I have to deal with a petrified toddler who will not believe that there are no injections involved this time.

I am so tired.  And because we are in isolation I can’t take the kids to my parents and have a rest.  He may not go anywhere and any outsiders have to be masked when they are in the same room as Boeta.  Have you ever spent a lot of time in a mask?  It is hot and uncomfortable and irritating and makes people without claustrophobia claustrophobic.  I don’t have to wear it (because I’m the mommy – my germs are special) and I can’t expect my mom to come to our house with a mask in this heat.  For those in other parts, Cape Town is in the middle of a heat wave.  It was 36 degrees yesterday and above 40 today.

And to be honest I don’t think resting or sleeping will make me feel better.  I am tired of the situation.  I am tired of being a regular in hospital.  I am tired of having to explain to Boeta why he has to be hurt.  I am tired of Carientjie being exceptionally clingy after I spent days in hospital with Boeta.  I totally get why she is clingy but I feel sucked dry of energy and then I feel guilty because I neglect her. 

Wouter and I have 5 minute chats in the morning, maybe 5 minutes on the phone during the day (in 30 second installments – he rarely has time during the day to talk) and if we are lucky 15 minutes at night before we both fall asleep.  I have to add that we are not, I repeat, not having relationship problems.  So don’t worry about that! 

I just really miss having time with him, not always talking but simply spending time together.

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.

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!