Week 54, day 4

Boeta received chemo 5 days a week for 2 weeks and then another treatment on Monday this week.  Usually he starts dehydrating by the end of the first week.  So when he was fine we took a deep breath and were thankful for every extra day that we could be at home and not in hospital for continuous hydration.  When we got to the second weekend Boeta looked like he was starting to dehydrate but after receiving a bit of fluid on Monday (while waiting for the chemo to arrive) he has been in perfect health.  He is definitely feeling slightly nauseous but has only vomited 4 times in the last week and not at all before that.  His digestive system is still seriously unbalanced but life is good!  Our Father knows when to give the mother a bit of a break…  Being stuck in hospital during 4 weeks of treatment and another week after that while the diarrhoea settles is really not easy.

Unfortunately we don’t get the opportunity to do a lot of normal things even though we are at home.  With Woutertjie running to the bathroom all the time we have to … well … stick around close to a bathroom.  So for now I am stocking up on ideas of everything we are going to do and everywhere we are going to go in a couple of weeks’ time.  It will be fun.

Advertisements

Ethan’s opinion

Today we went to hospital for Boeta’s only chemo treatment for the week.  We waited hours for blood results (as one does on the first day of a new chemo week) and then he had 15 minutes of Vincristine.  Woutertjie has always taken an afternoon nap.  The last 2 weeks or so he hasn’t done that but now that the chemo is kicking he is exhausted and sleeps 3 hours easily.  He fell asleep at 14:00, the chemo was started at 14:30 and we only went home at 18:00, when he finally woke up and we spent some time visiting Ethan in the next room.

Ethan Taylor is 6 years old and is finishing up his treatment for nephroblastoma (kidney cancer).  According to his father he has the mouth of a 16 year old.  He is way too cheeky for his own good!  I think that is the reason why Woutertjie likes him that much.

Deirdre, Ethan’s mom, is also too smart with her mouth.  I think that is the reason why I like her that much.

For a long time Ethan has refused to eat hospital food.  The food isn’t bad at all, but he wants stuff from the cafeteria (which is hellishly expensive), not from the hospital kitchens.  Today Deirdre thought she would outwit him.  Ethan asked for chips (french fries) and seeing as how chips is pretty much chips, she asked for some from the hospital kitchen thinking that Ethan wouldn’t know the difference.  Oh no.  Apparently he gave the plate one look and declared haughtily “I don’t eat hospital food!”

There you have it Deirdre.  Get with the program!  😀

Hallo Diarrhoea – I’ve wondered when you were coming to visit again

Yip, the Irinotecan has kicked in.  I have to admit, I expected the really severe diarrhoea to start last weekend already so we are very grateful for the extra week of only mild diarrhoea (oh, the things that we are grateful for <rolling eyes>).  But we are back at the stage where Woutertjie gets weighed a couple of times a day to make sure that he doesn’t loose too much weight and water.  And I am looking at him with medical eyes again.  My mom-eyes may see that he looks tired but my nurse-eyes assess his state of hydration.  At the moment dehydration is our main enemy.  This morning Boeta took 3 trips to the bathroom within an hour…

And he started vomiting this afternoon.  It is the first time in a very very long time that he did and it upset him a lot.

Wouter and I nearly decided to take him to hospital for some hydration but decided that he would last until tomorrow morning.  So we hung around him like starved mosquitoes and kept on nagging him to drink.  We are experts by now.

Tomorrow we will hit week 54 of the 56 treatment weeks.  I am not ready to stop treating, but that is a post for a different day.

Dented for life?

I have a theory. 

I hate dentists.  Wouter’s feelings toward dentists go way beyond that, into the realms of despise-ism (or something like that, anyway!).  Carien on the other hand, was counting the sleeps until she could go to “her” hospital so that the “tannies” could fix her teeth.

I hereby postulate that

1.  a Love Thy Dentist gene exists and

2.  it follows a classic recessive inheritance pattern.

This theory is based on the following facts and assumptions:

Universally very few people love their dentists.  Dentistry is an essential evil in most people’s minds, and Wouter and I are like most people.

Children resulting from the genetic union of two Dentist Loving parents (those exhibiting the phenotype coded for by the Love Thy Dentist gene) are typically Dentist Lovers too.  Where one parent exhibits Dentist Loving traits* and the other doesn’t (non-Dentist Lovers) there is a significant possibility that some of the children will be Dentist Lovers while some will be non-Dentist Lovers. 

In contrast, children of two non-Dentist Lovers rarely exhibit Dentist Loving tendencies.  If they do, one would often find family members speculating about the identity of the milkman while they discuss the child’s aberrant nature.

If we had a milkman I would be wondering about Carien’s origins myself.  I told her about her impending procedure on Monday.  Since then she tantrumed every morning upon hearing that it wasn’t D-day yet.  She is definitely showing recessive behaviour!

To get to the facts (how boring!), it went well.  Carien was extremely excited and I almost cracked up when she went limp in my arms from the anaesthesia.  She was very unhappy when she woke up from the anaesthetic but thanks to Dormicum doesn’t remember a thing.  For better or worse, she calmed right down with Mommy’s bosom close by…  The dentist managed to save all 4 her teeth – another miracle in our lives since even I could see how bad her teeth looked. 

Since Boeta had a full day of chemo scheduled my mom took him over for the day so that Carien and I could spend the day in bed cuddling.  We needed it.

I have to admit that I am very impressed with Dr Young, the dentist at Brackenfell MediCross.  I may just end up in her chair myself.  But with a lot less enthusiasm than Carien.

.

*Of course, this whole theory takes on a different perspective where one of the parents is in fact a dentist.

A tough day ahead

It is Thursday evening and I am scared out of my skull.

Carien is going in to get her teeth fixed tomorrow.  And she is getting anaesthetic.  And it is freaking me out.

Remember I told you she fell and broke half of her front tooth off?  The reason it broke that easily is because her 4 top front teeth are in a horrible condition.  Carien, who has never accepted a bottle in her life, has typical bottle baby teeth.  And she got it because

1.  she is still breastfeeding and spends a huge chunk of every night “snacking”

2.  my milk is very rich  (I have been a favourite with the breast milk bank for that exact reason)

3.  I didn’t brush her teeth well enough and often enough.

Number 1 I made peace with.  It is her way of getting enough mommy-time when I spend most of my time in hospital.  When it gets really bad I leave home before she wakes up and get home 30 minutes before she goes to sleep.  It is her comfort thing.  It makes her feel loved and safe and even though I wouldn’t mind if she stopped now, there is no way that I would force her off before Woutertjie’s sickness and hospital stays are firmly in the past.  I am that kind of mother. (rolling eyes at myself)

Number 2 I have no control over.  And when the kids were babies it meant that they grew wonderfully well and gained weight easily.  So I have no right to feel guilty about that.

Number 3 is the problem.  Why didn’t I spend more time brushing her teeth???  I know that we had bigger issues to deal with the past year.  And I know that it is milk teeth and her permanent teeth with appear eventually.  But her teeth are so bad that the dentist promised that she would try and save them, but there is a very big chance that she will pull at least some of the 4 teeth.  I don’t want my baby to walk around with a “passion gap”* for the next 4 years.  Not my little princess. 

And even worse, I am dreading the anaesthesia.  And Wouter just doesn’t seem to get why it upsets me that much.  Granted, he hasn’t been close during any of the anaestetic episodes (I’ve mentioned his unfortunate response to blood, needles and creepy thoughts before) so he has no idea what the emotional impact is.

From his vantage point (and logically) I shouldn’t be stressed.  After all, I helped to put Boeta under close to 30 times.  I bagged him during the time he stopped breathing (a normal occurence) while the anaethetist checked out the rest of him.  I lifted his floppy, lifeless body onto the bed we used to move him to the radiation bunker.  I should be very relaxed.  But none of this is the point.

Carien is my baby.  She is my healthy child.  I can’t handle the thought of seeing her going under or being under.  And I am plagued by what ifs.  This is my baby.

Please say a prayer for our little girl’s safety.  Although, by the time you read this she will probably be done already.  She is going in to theatre at 08:30 tomorrow.  I knew this for a week already but couldn’t bring myself to update about her tooth issues.  You might’ve noticed that I never posted an update on her dentist appointment.  I haven’t felt like such a major failure as parent in a long, long time.

.

*If you don’t know what a passion gap is, you obviously don’t live in the Western Cape.

Déjà you

Oy.  It is hard when you start hearing yourself in your children.  Tonight I was in the bedroom when I heard the following conversation:

Carien:  Moenie Boeta!  (Don’t Boeta!)

(ominous silence)

Carien:  (louder)  Boeta!  Los uit my foeters (goeters)!  (Boeta!  Leave my stuff alone!)

(contrite silence)

Carien:  (channeling her daddy)  Ek hoor nie vir “jammer sussie” nie…?  (I don’t hear “sorry little sister”…?)

Yes, she is 2 years and 5 months old.  And yes, with my children one can hear what the silence thinks. 

.

On a chemo note:  We are now in week 53 of 56.  Woutertjie had Vincristine and Irinotecan today and is doing well.  Too well in fact.  It is freaky how well he copes when I am about ready to collapse.  I don’t deal well with extended hospital stays.  It drives me to drink.  And since the only liquid I can get my hands on is tea, I end up high on caffeine and acting even stranger than usual.  Which might explain why I am busy baking cake at 23:00.  Actually, I am done baking cake.  I am busy baking a second cake now.

Tomorrow I am taking both cakes to hospital where Boeta and I will decorate them for the nurses.  He is going to make a huge mess and enjoy every moment of it.  And he will probably eat most of the decorations before it gets close to the cake.  Oh, to be a child again!

When you can’t plan ahead, don’t.

By now you know that my main gripe the past year and a bit has been that we can’t plan anything because it always mostly goes south.

We plan on visiting friends and then Woutertjie becomes neutropenic (no immunity) and we have to stay home.

We plan on going away for the weekend and then find out that Woutertjie’s platelets are very low and we aren’t allowed to go anywhere.

We plan on just staying home and then Woutertjie dehydrates and has to be hospitalised.

But this weekend we managed to get it right.  We didn’t plan anything and then drove to Pringle Bay to visit Wouter’s folks.  Hah! 

.

Being (mostly) normal children, Woutertjie and Carien have tried to self-harm themselves the whole day.  They packed plastic chairs at the top of the 10 step stairway in Oupa Skippie’s house and then walked from side to side on the row of chairs.  Woutertjie barreled down the footpath around the front of the house and nearly launched himself into the street ahead.  Carien is at that awkward height were she keeps knocking herself senseless against shelves and cupboard tops.

In some way I had to bring home the reality that

1.  tumbling down stairs is not a good idea

2.  rushing willy nilly down a cement path into the way of cars isn’t a good idea either

3.  not paying attention and running into things isn’t a prime survival strategy either.

So I told them that 1, 2 and 3 are going to hurt them and that even Oom Gerrit won’t be able to make it better.  They are on egg-shells at the moment!  😀