It seems Carien has chicken pox.

In normal, healthy children (like Carien) this isn’t much of a problem.  Keep them from scratching and wait it out.  In immuno-suppressed children (like Woutertjie) it is a huge problem.  You don’t want to know about everything that can go wrong.  He received the vaccination when he was younger but since his white cell levels are low, there may not be enough chicken pox-memory cells floating around to do the job. 

I spent the day in hospital with Boeta and on my way back Wouter phoned to say that the “mosquito bites” that she had this morning have started to develop personality.  I phoned the oncologist.  She was still at hospital at 19:00.  I don’t want her job.

The conversation:

S:  Hallo, it is Suzanne.  Carien has blisters.

C:  Please tell me it isn’t chicken pox.

S:  Uuuhhhhm.  It is blisters?  I don’t know!

C:  Keep them apart.  I don’t want them in contact with each other.  Can you let them stay in different houses?

So here we are, separated again.  The boys in our house and Carien and I at my parents’.  I don’t want Boeta to come close to my parents’ house since Carien spends all her time here and according to the photos on Google it is chicken pox.  I am very sorry for my mom who will have to disinfect their house from top to bottom after Carien is past her contagious stage.

And I am very sorry for myself.  Usually we take it slow in the morning and go to hospital at about 09:30.  Tomorrow morning, when Wouter leaves for work at 06:00, I have to be up and dressed and ready to leave.  He is going to bring Woutertjie to my car at my parents’ house and then we have to leave immediately so that Woutertjie doesn’t come close to Carien.  Fun times.

It doesn’t help that Woutertjie’s white levels are at it’s lowest in a long time.  It is now2.5 – definately not ideal.


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!

On sucking it up

So after a very emotional 24 hours of feeling very sorry for myself I am back.  Meaning I am back. 

I don’t feel comfortable feeling sorry for myself even though I do it very well (if I have to say that myself).  By nature (and by drama queen personality) I am more of an optimist.  And after all, pessimism and drama queening don’t mix and I am above all a drama queen.

So as of now, until my next meltdown, I am back and “making normal”.

Today was a good day.  My middle and baby sisters were both here today.  It really made Carien’s day because she is infatuated with my baby sister and my middle sister’s son, Adriaan.  He is 3 months younger than she is and she adores him.  She calls him Ada and puts up quite a scene when she wants him here now and he isn’t.  Someone needs to explain to her that he lives about 100km from here on the other side of the mountain.

It was the CANSA shavathon and we had a family outing to shave or spray.  My mom (who wouldn’t know what to do with a facebook account even if she had one), Chrismari (aka Tiesies), Carien, Adriaan and I had our hair sprayed.  Berno (Lielie’s husband) had a shave and a spray.  Lielie was at a proper hair appointment when we took the plunge.  Chicken! LOL!

Wouter is already shaving his hair in solidarity with Boeta so he had a scalp spray and I wrote “CAN” on the back of his head.  Do you remember the ad with the tagline “cancer can be beaten” with the guy with “can” shaved into his hair?  Wouter did the hairless impression of that. 

My favourite bit of the day was when Tiesies and I decided that Berno couldn’t have a uniform shave.  Oh no.  We helped to shave his hair and gave him a mohawk.  He is soooo not the mohawk type.  Especially not the pink mohawk with green back-and-sides type.  He was such a good sport even though he knew that Lielie would have a moment. 

Lielie has lots of moments.  Compared to her I don’t qualify for drama princess or even drama lady-in-waiting.  She can out-drama me any day.  And added to that Lielie is very gullible.  So when Berno told her that he will keep his mohawk she believed him.  Because that is what Lielie does.  We love her.

She will probably flap her hands at me for telling this story but I can’t resist.  A while ago they went on holiday and Lielie was going to fly for the first time ever.  She was very excited about it.  The morning of the flight she phoned me with that tone in her voice.  The tone that says that she just heard something that simply can’t be true, can it?

Berno told her that in order to plan for the flight not only your baggage, but you yourself are weighed.  In public.  For everyone to see.  Compulsory, because after all, they need to know how heavy the plane is going to be.  Me being me, I did not disillusion her and tried to explain that she can angle her body to be in front of the scale readout so that only some people will be able to see.  Lielie very nearly called off the trip.  She got soooo worked up!  It was fun.  And because we love her we only let her steam for an hour or two before telling the truth.  We really do love her.

We are doing well today.  Boeta is still in isolation but strangely it bothers him less than Carien.  She gets very aggro after a day at home and demands to go to my parents during the day.  Oh the rejection!  Of course my parents are very chuffed.

So that was today.  Will let you know how tomorrow goes.  Boeta got his booster today (Wouter and Tiesies took him) and will get another tomorrow and then on Monday we will start with chemo again.  Provided that his cell counts are high enough so you know what we need – start praying.  We don’t want to delay chemo.

And in case you are wondering, the start day is Monday because it is a 5 day course and it is difficult to get the chemo mixed over the weekend. 

Wouter’s parents have already planned their week so that his father can sleep over at the hospital.  I wanted to put their facebook link up but they don’t have any pictures loaded so that you can see what they look like.  Skimp, skimp, ma!

See, I really am sucking it up and I’m feeling so much better than yesterday.  Thank you for commenting, praying and being there for us.

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.

We may just get to go home tomorrow (God willing)

Another good day.  OK, he hasn’t received his sub-cut injection yet and it will be an issue but it isn’t right now.  See, I’m taking it moment by moment.  Aren’t you proud of me?

Dr De Villiers (the paediatrician) was here a minute ago.  He is very happy with Woutertjie’s lack of fever for the last 2 days and if it stays like that during the night we can go home!  I never realised how much I love being at home with my whole brood.

Boeta’s white cell count is 3.1 as of this morning.  That means that it just about doubled over the last 36 hours.  Fabulous!  As a result his IV antibiotics came off for the first time since he was admitted last Thursday (9 days ago).  He was quite jittery about it coming off.  It took about an hour of explaining and calming him down and even then he barely lay still for it.  Fortunately because he has the Broviac line it is only a matter of unscrewing the connections and not removing and later redoing “needlework”.

He is finally succumbing to cabin fever.  The whole day he hears the other children (mostly day-admissions) in the ward and he wants to be there.  But he has to stay in his room.  Fortunately at night there are usually only one or two other children so it isn’t as tempting.

Unfortunately for Boeta going home will not mean seeing other children (except for Carien obviously!).  Dr De Villiers was adamant that outsiders should be avoided.  Boeta’s white count is still very low compared to “normal” people and he needs to be healthy for chemo on Tuesday.  So if you planned on visiting – don’t!  We will lovingly wave to you from behind our fence but that is as far as you will be allowed.  Because we are on a mission.  Mission Possible!

I don’t know if I’ll have time to update over the weekend but we will be back in hospital on Tuesday and then I’ll update.  Have a good weekend!

What a beautiful day

All in all yesterday was a good day.  Factually, that is.  Emotionally not so much!

Yesterday we heard that:

1.  Boeta gained weight!  He was 19.1kg when he was diagnosed, dropped to 16.6kg last Thursday when he was admitted and yesterday he weighed 17kg.  He is eating OKish at the moment provided we give him what he feels like at that particular moment.  He can’t tell us what he feels like so we just guess, guess, guess!  Maybe he wants some wild boar (thanks for that, Lea!).

2.  He’s been feverish every single evening and the paediatrician worried that there may be infection in his Broviac.  So yesterday they did a chest xray and it is clear.  Thank God!  If there was infection they would’ve had to operate again to remove it and insert another one. 

3.  The cardiologist came by to do an ECHO (sonar) to check that the Broviac is OK.  It is.  Added to that she looked at the tumour in his heart and it hasn’t gotten bigger.  That is good news too.

4.  His white blood counts are up.  It should be between 5 and 15.  His was 0.5 when admitted last Thursday, it dropped to 0.4 on Saturday, increased to 0.7  on Monday and yesterday it leaped to 1.5!  He has been getting bone marrow boosting injections on his thighs.  Later today I probably will repost yesterday’s update since I have to assist with holding him for it.  They put local anaesthetic patches on but since those are plasters and it is then followed by the injection he goes mad.  Please pray for us.

Round number 3

Today is exactly four weeks from the start of this roller coaster and Boeta received his third round of chemo today.  Not bad going for deepest darkest Africa!  I am immensely grateful for the speed and efficiency of private healthcare and that we can afford medical aid to pay for it.  I am very much aware that Boeta probably wouldn’t have been diagnosed and treated in time in the state health system. 

Woutertjie is looking well and his full blood count improved.  His platelet count improved from 70 to 280 (normal is 140 – 420).  His white blood count was 0.5 on Friday, 0.4 on Sunday and is 0.7 today.  Normal is 5 – 15 so we still have a way to go but at least it seemed to stop dropping.  Yesterday he started receiving subcutaneous boosters to stimulate his bone marrow so let’s hope it does the job!

I’m leaving hospital early tonight – I should be home at 20:00!  Let no one ever tell me that working for a boss is hard work!  I used to spend 8 hours a day working, 3 hours getting to work and back and the rest with my family.  Now I spent 24 hours with my family, 12 of that in hospital and it is a lot more work and a lot more tiring than “proper” work.  At least at UCT one gets tea breaks!

I am now off to play with Carien.  She is a year and 5 months old and is such a little drama queen!  She recently started playing with dolls, stuffed toys and anything that she can potentially call “baba”.  All she really does is picking them all up and carrying them around, scattering as she goes.  She has the attention span of a drunken fly and loses interest as soon as she sees the next thing.  She is such a girly girl.  A sure way of getting her attention is to mention clothes or jewellery.  And handbags.  And telephones.  And shoes.  Everything no girly girl can be without.