Things that get to me

I know that we’ve been in hospital too long when I start asking people what day it is on an hourly basis.  And when they tell me “it’s the 12th” I politely say “yes but which DAY is it?”, while I wonder why anyone would need to know that it is the 12th.  And yet, 5 months ago I expected to hear that it was the 12th.  Now I can’t keep track of the name of the days anymore.

The main problem is that the nursing staff doesn’t work “proper” hours.  Their shifts are more than 12h long and they work 3 days , are off for 2, work 4, off 1, etc.  Or something like that.  Which means that there is no rhythm to their presence.  It is confusing.

I spent the whole of Friday thinking that it was Sunday. 

Another major issue for me is Boeta’s hypo-Hb induced humour-deficiency.  This is my fancy speak way of saying that he becomes a moody teenager the moment that his haemoglobin level falls.  And it has fallen.  He is unpredictable, bursts into tears for no reason we can fathom and in general drives us to drink. 

Before you start worrying, the drink is always coffee or tea.  Because whoever makes it has a 5 minute window away from the children.  They are being exceptionally trying and we are having trouble biting our tongues and dealing with it.  Carien is coming down with a cold and Woutertjie is still very un-domesticated after spending so long in hospital.  It takes him a while to get used to normal life again.  And while we know that we should be patient it is getting a lot to ask for.

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Day 1 of 5 (take 2)

Yes, it is the first day of 5 of the last treatment of the second block of chemo.  That was quite a complex sentence.  Never mind. We are in hospital and will be until Saturday morning.  Ta-da.  As easy as that.

Boeta is doing very well.  He tends to forget about the drip lines (3 at a time) that are constantly connected to him but that is par for the course for the first day back.  By tomorrow he will treat it like a second-and-a-half set of arms.

Gerrit (paed) told me today that if he saw Woutertjie today for the first time he wouldn’t have been able to diagnose cancer.  The abdominal tumour has shrunk so much that he can’t feel it.  Do you have any idea how much I needed to hear that going in to next week? 

I really love that man so much.  Someone (who is going to confess????) told him about my moment last week and he very gently asked me about how I’m doing now.  He is such an inspiration.  Even though he is renowned as an excellent paediatrician he is such a humble man with such a tangible love for our Lord.  He is so optimistic that one can’t help but join him!

On Friday I said that I was having trouble praying;  that God felt so far away.  Have you experienced those times where you feel as if you are praying into the ceiling?  You are talking to yourself and your words fall down around your feet?  Someone told me this week to stop complaining – my words stayed close to me because that is where Jesus was.  So next time you feel as if you can’t get your words to reach God, look around.  He is standing next to you.  In fact, he is holding you in his arms.

***

Tonight I heard that someone very dear to me is pregnant.  To the two of them:  Congratulations!  May God bless and keep you and your baby.  May that little dot grow and thrive and be the healthiest baby ever.  You will be excellent parents! 

Oh.  And may the morning sickness pass quickly! 🙂

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.

OK, I’ll update! Stop nagging!

Oh my.  If I even wondered if people actually read the blog I don’t have to anymore! 😉

I’ve received so many calls, comments, emails and Facebook messages asking if we are OK.  Yes, we are OK.  I’ve been a very bad blogger but I blame that on Woutertjie.  For no good reason, it is just that you aren’t allowed to be angry at Boeta and now I can get away with it.  Blame those who can’t type back!

The chemo finished on Wednesday afternoon and we were allowed to go home soon after.  Woutertjie was very nauseous on Wednesday morning when he woke up.  He says the krokkenoster bites him and then he gets nauseous and then he spits (ek spoeg!).  Fortunately he responds very well to Zofran (anti-nausea meds) and he was better soon.  He ate Weetbix for breakfast and then demanded more.  And white milk (wit melkies).  For some reason flavoured milk is very last chemo.

For the first time I spent less than an hour trying to get him away from the hospital.  It took only 50 minutes to persuade him to go home.  But only because I promised that he could give the “ontslag” card to the office.  (What is “ontslag” in English?  I can’t think of the word.)  He was very disappointed when he couldn’t put it in a machine like a parking ticket.  He had to give it to a person.  He almost decided to go back.

On Wednesday morning the oncologist (Dr Stefan) and the paediatrician (Dr de Villiers) arrived at the same time for ward rounds.  I liked having them there at the same time.  Dr Stefan is satisfied with Boeta’s progress and amazed at how good he looks.  She almost had a nervous breakdown when I told her that Boeta wants to climb trees and ride his bicycle.  When the first chemo started on the 6th of January I asked her if there was anything that he shouldn’t do and she said that I shouldn’t worry, he wouldn’t want to do anything anyway.  She says he is receiving very high doses of chemo.  No one bothered to tell him.  Or he decided not to listen (which wouldn’t surprise me).  Whichever way, Boeta is doing well and is driving Carien nuts.

Vincristine, Cyclophosphamide, Doxorubicin

Those are the drugs that Woutertjie received today.  He is still busy with the doxorubicin – it is now 17:31 and he has another 4 hours of it left.  And tomorrow he is getting more. 

Boeta received Zofran (anti-nausea) before the chemo started and so far he hasn’t been nauseous.  We are very grateful. 

At the moment he is very puffy – his eyes are just slits – so he received diuretics.  The oncologist reckons it is fluid retention and is keeping an eye on him.

We were visited by the people from Reach for a Dream today.  I didn’t even think about Woutertjie being “eligible”.  They tried their best to find out what he likes, who he would like to meet, what he would like to do, etc.  He ignored them completely except to tell them to move over.  He was watching Mickey Mouse and they were blocking his view.  That’s my boy!  Nothing gets between him and whatever he is interested in at the moment.

I thought I was OK for today.  I think mentally I still am but I am very tired.  I’ve forgotten how tiring it is to sit and do nothing the whole day.  At the moment I can’t even think of anything witty to end this post with so you will have to make do with a plain and simple goodbye.

Goodbye.

Blessings by numbers

I feel like a broken record.  We are so blessed!

This morning I phoned the oncologist to find out if Woutertjie should go for full blood counts today already.  The idea is that, if his levels aren’t on par, a blood transfusion can be arranged before his chemo starts.

For various reasons (most of it involving me being very lazy today and some involving Woutertjie being in isolation) I only got round to taking him at 16:00.  The whole way to the hospital I had to prepare him to go home again.  He was adamant:  he wanted to visit the “tannies” at the hospital and he wanted to sleep there tonight.  Trust my son to turn the typical response to hospitals upside down!

Dr De Villiers (paed) sent Boeta’s results to us:  Hb 9.0 (was 7.8 ) ie OK, platelets 834 (was 71) ie very good, white cell count total 4.1 (was 0.8 ) of which 1.07 (was 0.02) are neutrophyls, ie wonderful!  We are so grateful.  This means that chemo can start again tomorrow.  Thank you God!

I spent many many hours fighting my way through immunology at university.  Let’s say it wasn’t my strongest subject and leave it at that…  It must be one of the most challenging fields of study because everything you think you know can change at any time as research progresses.  As previously dwelled on, I’m not good with change in the fundamentals.  Minor things I don’t care about.  But don’t change my morning routine, my bank account number, my cell phone number or the taste of Coke.  You will be messing with the wrong woman.  My female ancestors went barefoot over the Drakensberg, after all!  And immunology is all about change. 

So imagine my surprise when I realised this weekend that I am grateful for the bits of immunology info that actually stuck around.  For one thing, I know the bare basics about white cells, where they come from and what they do.  At least according to the knowledge available at the time of study.  God has a strange way of arming one for what lies ahead.  In this time of constant change I feel anchored in my basic knowledge of immunology.  Who would’ve thought?

Tomorrow morning at 07:30 Boeta and I will report to the paediatrics ward for his 5th round of chemo.  The previous time that he received this particular drugs it caused mouth ulcers, nausea and eventual dehydration.   If he doesn’t have side-effects we could be out of hospital by Wednesday but we are fully prepared to stay longer until he is ready to go home.  Please pray with us for our son.

Mixed emotions

What a roller coaster day.

Woutertjie had fever throughout the night and didn’t eat anything the whole of yesterday.  He is currently on IV antibiotics again.  After being very nauseous yesterday he woke up this morning with a bit more attitude and refused to let the oncologist examine him. 

This morning I went to church while Wouter was with Boeta in hospital.  At the end of the pre-service singing there were two children’s songs.  The first was “Kyk hoedat die voëltjies vlieg” (Look at how the birds fly) and that was the end of my composure.  Everytime Boeta had to get a drip inserted I sang that to him to try and distract and calm him.  It is the song we had to sing every day that I took him to play school and he loves that song.  So there I was, sitting in the front row, tears streaming down my face.  I’m not comfortable with showing sadness in public.  Everyone is allowed to see me feeling good but I save sadness for the privacy of my own home.  My friends have been quite freaked out after reading some of my blog entries and I think they will be really freaked out hearing that I cried in public.

The sermon today was about the state of our hearts.  Do you have a Saul-heart, made of stone with no love for God?  Do you have a David-heart, filled with Godly love even though you stumble every now and again?  Do you have a Solomon-heart, trying to straddle both worlds?  This sermon may have been written with me in mind.  The whole time I felt God telling me that he was pulling me from my Solomon existence towards a David one.  And I may be kicking and screaming but He will not give up on me.

At the end of the sermon the minister, Ds Tielman Germishuys who is also battling cancer, came to me to ask how Boeta was doing.  I told him that he wasn’t doing great and he called me to the front, explained to the congregation who I am and asked everyone to join in a prayer for Boeta and our family.  I can’t explain how much comfort I derived from that.

Woutertjie is feeling better and better as the day has gone by.  At the moment he is sitting on the floor on his Lightning McQueen blanket playing with his Thomas trainset.  I can’t imagine an adult going from feeling horrible to wonderful within a couple of hours.  Children! 

My baby sister, Tiesies, is staying over at hospital tonight so that Wouter can have a good night’s sleep before the week starts again.  Wishing you all a good week!