And breathe …

It looks like chicken pox, it acts like chicken pox, it feels like chicken pox.  But it isn’t chicken pox!  😀  We are so blessed.  Thank you for every prayer.  Once again they have been answered.

Gerrit (the paediatrician) gave some multi-syllable word to describe what it is.  He is trying to sound smart.  He said that, by the way!  So we are all at home again. I love being bothered by two single minded toddlers.  It feels like home.

On a different note, how do children manage to cut adults down to size so easily?  You know what I’m talking about.  With a few seemingly random words they manage to slice cleanly through your self-confidence, your self-worth and usually call a spade a spade.

This past week my children discovered Joseph and the Amazing Technicolour Dreamcoat.  My mom bought the DVD and the kids have been watching it repeatedly. 

This morning on the way to hospital Woutertjie wanted me to sing bits from the musical.  We started off well.  He wanted to hear a bit of “Joseph’s daddy” so we sang two verses from “Jacob & sons”.  Then he wanted the song of Joseph in jail so we did a couple of lines of “Close every door to me”. 

And then he wanted me to sing the king’s song.  Pharoah sings about his dreams in Elvis style.  I was about two lines into my energetic Elvis impersonation when it became too much for Woutertjie.  So with typical offspring-honesty he told me: “Mommy, I think you should stop singing now and then we can just drive.”

Ouch.

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?

No surgery!

Yes, there is a connection between Wouter’s silly smile and me not updating the blog yesterday. 

Gerrit (paediatrician) phoned yesterday to say that Dr Sidler, the paediatric surgeon, decided that it wasn’t necessary to operate on Woutertjie.  This is such fabulous news!  Surgery is always a risk and since they were planning on taking biopsies there was a significant risk of bleeding.  Praise God!  We’ve been so blessed throughout this journey. 

So yesterday I was walking around with a silly grin and I spent so much time on the phone that I didn’t get round to blogging.  Of course it didn’t help that I put Carien in bed at 20:00 and she promptly put me in bed too.  It has to be her fault, right? 

I never get a chance to to anything on the computer with the kids around.  Woutertjie wants me to stop everything and let him play internet games (Thomas the Tank Engine) and Carien wants to watch pictures of babies.  And they want to sit on my lap at the same time.  Fun times!

We went for a full blood count today and according to Gerrit the results are good.  He couldn’t give me the exact numbers though – they phoned him with the results and he couldn’t remember the exact counts.  Shame on him.  But Boeta’s counts are good – we can see that from his behaviour too.  He is running, playing and eating, eating, eating.  I love it!

Gerrit also told me today that the medical aid denied parts of Woutertjie’s next treatment.  The expensive parts.  I contacted them and it seems to be an administrative issue between the oncologist & radiologist and Discovery at the moment.  The drug that was denied is the R35 000 per ampoule one that I told you about.  And the radiotherapy is also very expensive.  Please pray that it gets sorted ASAP and that Discovery will pay.

Can you feel it? Can you see it?

I’m doing a happy dance!!!

Gerrit ( I love you, I love you, I love you!) suggested that we go away this weekend.  Hey, if your child’s paediatrician thinks he is fine to travel you don’t wait around for him to change his mind!  So tomorrow we are off to Wouter’s parents in Pringle Bay.  It is about an hour’s drive from here and the ultimate rest spot.

Boeta’s FBC this morning:

Hb 10.1 (we can see the difference)

platelets 330 (or something like that)

white cells 2.4 (!) of which neutrophils 0.6

We will be in semi-isolation with no visitors but at least we will be away from home.  Can you feel my excitement?

The last time we visited Wouter’s folks was end November / start December and we were on our way there for Christmas when Boeta was diagnosed.  It has been a long time.

Gerrit will let us know when we should report at the hospital again.  I will let you know when I know.

For now I am off to start packing.  Yes, it is only 16:30 on Thursday but I’m excited, OK?

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!

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! 🙂

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!