Yes, it is fever time again.  This morning when Boeta opened his eyes he was nauseous and feverish.  Only 38 degrees, but that meant that chemo was delayed pending the results of a full blood count.  Amazingly his FBC looked very good.  His white cell count is 4.8 today – the highest since the start of chemo and just about normal.  His CRP is <5 (higher numbers indicate infection) so that is also good.  Chemo is going ahead but he is being monitored even closer than usual.  Please pray that he can finish this course of chemo and that the side-effects will not bother him.  He is very quiet today.  He is refusing all food and drink but that doesn’t keep us from trying.  Fortunately he is in hospital so if it becomes a problem they can put up a glucose drip.  At the moment he is only receiving saline, not glucose.

Wouter is off to work today again.  He is tired beyond belief but being the person he is he can’t sit back and rest when there is work to be done.  Please pray for him, specifically health-wise.  We can’t afford him getting sick at this stage.


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!

Day 2 of 5

Well, Woutertjie is done with the second day of chemo.  Three more to go.  He is on a drip the whole time.  Literally.  Not that he lets it stop him.  He makes us cringe with the things he gets up to with the Broviac in tow.  We keep on cotton-balling him and he keeps on ignoring us.  So in summary we have a normal relationship. (Wouter is backseat-writing and he wants me to finish the previous sentence with an exclamation mark but I refuse.  I know you wanted to know this.)

Today was another good day.  Boeta is still refusing to eat any “normal” food.  Anything resembling a vitamin is firmly rejected with a “no mommy, I have a krokkenoster in my tummy” while any junk food is savoured.  Except for cherry tomatoes.  He still likes them.  Go figure.

I presented him this morning with his breakfast.  He refused.  I asked if he wanted droëwors (dried sausage for the non-SA readers).  He refused.  I took a looooong piece, told him that it was mine and that he was not to touch it under any circumstance.  He finished it within 5 minutes.  I dedicate this moment to my mother, who, using similar deplorable techniques, managed to raise 4 well-adjusted, somewhat-honest children.  But we are undoubtedly fabulous.

To get back to the point:  This is a 5 day chemo session.  Then Boeta has 2 weeks off with weekly blood tests but no chemo.  And then we redo this complete set of chemo treatments:  a 3 day treatment, 2 weeks of one day treatments and then a 5 day one.  After that, the week of the 17th March the re-assessment happens.  Then they redo all the scans and decide where to from here.

We need you to pray that they will see significant, if not total, reduction in the tumours.  Specifically please pray that the tumour in his heart will disappear.  That is the biggest concern because everytime he needs to get anaesthesia it presents a huge risk.  A tumour can be surgically removed from many places but not from inside the heart.

Thank you so much for reading our blog and for commenting and please feel free to give the link to others!  We appreciate your prayers and support more than we could ever tell you.  Thank you.

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.

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.

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.

The Panorama Barbershop opened yesterday

For the first time in history there was a multiple hair shaving in Panorama’s paediatric ward. 

Yesterday I started with a long winded, roundabout story to prepare Boeta for having his remaining hair cut and eventually going bald.  I told him that Wouter (daddy) was unhappy with his own hair because he had to constantly wash it and it was falling out and being in his way and he was planning on cutting it all off.  And lo and behold, Boeta interrupted my tale by saying: “Yes, and then daddy can cut my hair off as well.”

No issues, no questions, just a statement.  Aren’t children amazing? 

The night before (Sunday night) Woutertjie repeatedly told Wouter’s dad that his hair was breaking off and that it was bothering him because it got in his mouth and nose.  He really hates hair.  Now, after the barbershop attempt he looks like a mouse got hold of him – some patches are completely bald from all the “breaking hair” and some still has tufts of hair left over. 

I didn’t think seeing him without hair would bother me.  After all it is only hair.  But this morning when I got to hospital and saw him through the window to his room he looked so small and so bald and so sick.  Why does one unconsciously equate hair with health?  I never knew I did. 

Fortunately no-one told him that he is sick.  He is watching the Bee Movie at the moment, lazying on his bed.  If you didn’t know him you’d think he was perfectly fine.  If you knew him you would know that there is no way that he would lie and sit around the whole day.  He used to be very active, very outdoorsy and very dirty.  He used to be clean for about 2 minutes every day – the exact time between getting out of the bath and getting dressed.  You know how a dog rolls in the dust after a bath to “find itself” again?  That’s our son.  Well, the day will come again when he is outdoors and dirty.  For now he smells like hospital.