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 3 of 5

Boeta passed his pre-inspection and chemo may go ahead today.

Every morning he is checked out by both the paediatrician and the oncologist to make sure he is healthy enough to receive the day’s chemo.  And thank God, every day until now he has received the all clear.  So as soon as the chemo drugs arrive from the oncology unit he will start.  He is on a drip 24 hours anyway so it doesn’t bother him.  He is treating the tubes like extra arms – he isn’t even aware of them.

This morning he refused breakfast, apart from his (double portion) bacon.  He finished it and demanded more.  And when the hospital couldn’t deliver quickly enough he insisted that we phone my mother and tell her to bring some from home.  So any time now Ouma should arrive with his bacon.  Lots and lots of it because that is what he asked for and that is what he will get!  Grandparents.  *shakes head*

I asked my mom a while ago why she allows my children to do things that I wasn’t allowed to do.  She gave me The Look and said simply:  “You are my child.  I had to raise you well.  They are my grandchildren.  You have to raise them well.”  I couldn’t argue with the logic.

Wouter’s father, aka Oupa Skippie (Grandfather Boat because he has a rubberduck), has been staying with Boeta the last two nights.  They both love it!  When we leave they are usually sitting flat on the floor playing.  Ouma Skattie (Grandmother Dear) is looking after Carien today because my dad is going for an eye operation.  I think they are going to have lots of fun.  Carien is such a girly girl and loves drawing, colouring and anything pretty.  What do people without attentive family and friends do?  I don’t even want to think about how we would’ve struggled.  Thank you to all the grandparents, uncles, aunts, cousins, friends and supporters.

Boeta has now decided that he wants pink (strawberry flavoured) milk.  So I am off to find some.  Because chocolate milk is no good when you need to have pink.  Any bets that he will not want it by the time I get back? 🙂

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.

Pointed answers to random questions

Q: What is “krokkenoster”?

A: Just a word.  It is a combination of krokkedil (crocodile) and renoster (rhino) and a word our family has always used for “nice”, harmless bugs and things and whatever.  When Boeta was diagnosed I had to tell him what was going on in terms that he would sort of understand but not upset him too badly.  So I told him that a naughty krokkenoster was inside his tummy and that it was making him feel sick.  He seemed OK with it and off we went.

Q: Why is the blog in English when we are Afrikaans?

A: Even though we are from Afrikaans families Wouter and I have many English speaking and non-South African friends.  So when the time came to update all and sundry on Woutertjie’s progress it made sense to do it in English so that everyone could follow.  So when I make gross grammatical or spelling errors just ignore it!

Q: What does Boeta’s chemo schedule look like?

A: It is very complicated.  He started off with a 4-week block of weekly treatments with a total of 5 drugs.  The last of the 4 will be from tomorrow.  Then he has 2 weeks off before this 4-week block repeats.  After that he is re-assessed to see what the effects of the chemo on the tumours were.

From then the schedule changes completely, with yet another drug being introduced during a 5-week block as well as possible radiation depending on the results from the re-assessment.

Q: When does he have to be in hospital again?

A: When it is time.  We stopped relying on planned dates when I took Boeta for a 5 minute check-up last Thursday and he stayed in isolation in hospital for 10 days.  So according to the schedule he may be at home for days but in reality things may turn out very different.

Q: How do we manage to stay so strong?

A: We aren’t strong.  We are being carried by God and through your prayers.  I don’t think anyone is ever strong enough to deal with something like this but we don’t have a choice.  We have a responsibility to our children to “make normal” and so we do.  That doesn’t mean that we don’t fall apart every now and again, that we don’t look at each other and rather not say a word or that we don’t look at Boeta with fear in our hearts.  Often Wouter or I have bad days and then the other one needs to be strong so that we can make it through the day and face the next one.  Often we prefer to not look at each other or speak to each other because we are both too fragile.  We need you to constantly pray for us.  For Woutertjie to heal, for Wouter and I to be strong and for Carien to feel loved in the middle of this chaos.  We pray and believe that God will see us through this time and grant our son a long and healthy life.

Please keep on praying.

He is home!

After 10 days in hospital in isolation connected to IV tubes Woutertjie is home!  The boys (Wouter and Wouter) arrived home at 8 this morning.  Boeta is currently lying on the couch twisted up like a pretzel, watching Cars and eating pretzels.  OK, he is now lying with his bum on the armrest and his head on the seat – I stopped asking questions long ago!

Just to keep the balance in the day I managed to have a shocker until now.  Carien managed to lock herself into my car.  So there she was, sitting strapped into her carseat holding the car remote and looking very impressed with herself for managing to have a boat load of adults looking at her through the windows.  And all the adults are miming their version of “press the button – no the other button”.

Eventually a locksmith had to be called in.  And bless him, he didn’t charge a cent for rescueing the damsel in distress.

Of course Wouter is trying to convince me that I am not to blame.  He is telling me that I am tired and tired people make mistakes and all that jazz.  He doesn’t seem to understand that I am unlike other people.  I am the one trying to convince people that they shouldn’t be so hard on themselves while off in the corner I’m beating myself up for not being absolutely perfect.  So can someone please tell Wouter not to interfere with my self-flagellation?  It takes all the fun out of it.

Anyway, we are at home for the moment.  On paper we should be here until Tuesday’s chemo but reality might just interfere with our plans.  So we are enjoying every moment and not worrying (too much) about tomorrow.

I’m being abducted by Annie and Stephanie (my longest and second longest friends) today.  I have no idea what they are planning but as long as it doesn’t involve hospital or home I’m fine with it!

Have a good weekend everyone!

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!