Shock and horror! Today went according to plan.

And that just about sums it up.  I am speechless.

Well, mostly speechless.  I have to tell you about the details of today after all.

If every hospital visit could be as obstacle-less as this one I would be one happy oncomom.  We got to hospital, the admission took minutes (thank you Bianca!), the Broviac worked like a dream (a good dream), the blood results were back quickly, Boeta barely noticed the GCSF booster injection, the Vincristine was mixed and ready in no time and through all of it we had Sharon looking after us.  That woman is gifted.

Boeta initially wasn’t going to get Vincristine because his blood levels are so bad.  But following the results Cristina decided that he could get it.  His Hb is 8.0, white cells 0.4 (a 400% increase and he is still neutropenic! 😀 ) and platelets about 90.  Since the white cells are starting to increase things are looking well.

On Friday when we found out that Boeta’s platelets were that low (14) Cristina phoned to ask about his general well-being.

C:  (very concerned, so her accent is heavier than usual)  How is he?

S:  Fine.  He is eating and playing.

C:  (shocked)  He plays?  He eats?

S:  Yeah.  If it wasn’t for the bruises I wouldn’t have suspected his levels were that low.

C:  How is his sister?

S:  Healthy.  No sniffles or anything.

C:  That is good. 

S:  (laughing)  I thought you would like that!

(silence)

C:  He is playing???

S:  Yes.

C:  I am taking 2 Panado for the shock.  And a glass of wine.  I am standing outside.  I had to get fresh air after seeing the results.

S:  (laughs)  I think you should have another glass of wine!

C:  It still won’t be enough to make me feel better.

S:  How about another bottle?

C:  Oh no!  I have to work.  I am taking a Panado and two glasses of wine.

 

I think that will be my motto from now on. 

“One Panado and Two Glasses of Wine”.

Maybe I should  try it now…  See you around!

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Feet of clay and all that

When W-squared got home today I was informed that

1.  Boeta has to be cotton wooled.  He has no immunity and we have to be extra careful.

2.  I was allowed to phone Gerrit before 12:00 and after 14:00.  His phone was “going for servicing” during the 2 hours that the TriNations rugby game took place.

Me being me I just couldn’t let it go at that.  So at 11:55 I phoned him. 

S:  Hallo Gerrit!

G:  Suzanne.  You have 4 minutes to say what you have to say.

S:  But I wanted to talk for 5 minutes?

G:  Oh what  a pity, I have to go now.  I have an important incoming call.

And here I thought he was an upstanding citizen that wouldn’t lie to the mother of his favourite patient.  Feet of clay, I tell you.

The actual reason that I called him was because Woutertjie was complaining about a sore throat.  So this afternoon when Gerrit did his ward rounds he had a look at Boeta.  All seems fine and Boeta received his second booster injection.

Theme for the week – SURPRISE!!!

Do you ever get the feeling that you are living a script from a movie?  It may be a thriller (adrenaline-phobe goes bungee jumping).  It may be a romantic comedy (they meet and then life happens).  It may be a horror movie (shopaholic opens credit card statements).  It may even be a ’70s classic (Andrew does maths).  In our case, this week we lived a documentary:  Coping with Life’s Crisises – Dealing with Surprise.

Today was the cherry on top of quite an unusual week.

First we had the Broviac on strike on Monday.  On Tuesday we had a totally unexpected red cell transfusion.  Wednesday and Thursday mostly behaved themselves – there is a possibility that I was just too drugged to notice.  But they made up for all their restraint today!

Let me start with Woutertjie’s contribution.  When I tucked him in for a nap this afternoon I noticed a bruise on his head, but thought that he just hit his head or something.  When he woke his trouser leg moved up and I saw this:

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Multiple bruises = low platelets

Low platelets = immediate platelet transfusion

Boeta insisted that we take a picture of the two of them together before we could do anything else.

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After the photo session Wouter took Boeta to hospital for a full blood count.  They came home to wait for the results and pack their bags.  By now we know that upsets like this result in hospitalisation.  Turns out his haemoglobin is 8.4, his white cell count is 0.1 and platelets 14.  In other words, time for a platelet transfusion and urgent intervention in the form of GCSF boosters.  He started his first of 5 shots tonight.  He hates it.  Wouter and wouter are staying over in hospital tonight.  As I’ve told you before, from when they decide to do a transfusion to when it actually happens takes hours.  And hours.  So when the platelets finally arrive they will start the transfusion and it will run while Boeta is sleeping.

While all of this went down Stephanie sent me a message.  We spent about half an hour talking this morning, mostly discussing the upcoming birth of their first baby on Tuesday (1 September).  She was feeling “funny” but had a lot of things to do before the weekend and her daughter’s birth in 3 days’ time.  I thought I would be doing her a favour to not tell her that for me, “funny” at 39 weeks meant iminent labour…

At 15:30 she sent me a message to inform me that her caesar was happening at 17:00.  It is hard being me, always knowing best.

Welcome Lyndalize!  And congratulations Steph and Charles!

lyndalize

I learned an important lesson

When you get given a sleeping pill and the doctor tells you to drink it at 20:00, don’t wait until 23:00 before you take it.

I knew I didn’t sleep well, but I never realised how badly.  Carien shares our bed (the only way that she sleeps) and she checks on whether I am lying next to her every hour or so by having a midnight snack.  She is a constant night time breastfeeder.  I know that she does it because she misses me and wants the security of knowing that I am close.  But knowing it doesn’t make me sleep any better.

I was given a prescription for sleeping medication by my doctor.  She thought that a couple of hours of good sleep might be beneficial to my coping powers.  Maybe I should’ve mentioned that I am very easily sedated.  Some people don’t feel codeiene at all.  Some get mildly sleepy and may yawn.  I sleep.  If the label mentions a possible sedative effect, you can rest assured that I would indeed rest assured.

Admittedly, the last while I’ve been pretty immune to anything sleep-related.

I remember nothing about last night.  I can’t remember waking up a single time.  Carien must’ve gotten a bit of meds through my milk because she too slept like the proverbial baby.  Maybe it was just because I slept peacefully that she also did.  She likes to have something solid and non-moving next to her.  And I wasn’t moving anywhere.  This morning Boeta woke me with his customary body function related requests.  I suspect he repeated himself quite a number of times before I responded.  And I was auto-piloting myself through the motions because I definately wasn’t awake.  Carien was still sleeping so I got back into bed.  Eventually Boeta realised that no one was going to entertain him so he joined us in bed and he too fell asleep again.

We woke up at 08:30.  And I am using “woke up” in the broadest possible sense.  I needed lots of caffeine to keep my eyes open! 

Moral of the story?  There is a reason why they tell you to take medicine at a certain time of day.  Maybe the doctors know better after all.  But only sometimes.  Mostly I know best.  *insert cheeky grin*

Lesson for the day: Expect the unexpected

If you asked me yesterday morning what today held I would’ve told you that I had an appointment from 15:00 to 16:00 but that was it.

In the end today looked like this:

05:00  My alarm goes off – Wouter has to get up and wasn’t sure that his cell phone battery would last.  I get up and go wake Wouter in Boeta’s bed.  This musical beds thing is really getting old.

05:01  Wouter’s cell phone alarm goes off in our room where both children are sleeping in our bed.  I bash myself a beautiful bruise on the thigh in my rush to get to it before the children wake up.

06:00  Boeta wakes up and wakes me up to inform me that it is dark and I should sleep.  Thank you, darling.

07:00  I give up trying to snooze with a 4-year old loudly telling me about his body functions (Mamma!  Ek wil booollllliiieeee!!!!!  –  Mamma!  Ek het klaar gebooolllliiiieeee!!!!!  –  Mamma!  Vee af my boudeeeeee!!!!!  –  Asseblief Mammmmmaaaaa!!!!!) and demanding milk.  White milk (not flavoured) in a bottle.

07:15  Carien also wakes up and immediately makes a grab for my boobs.  She then gives me a milky grin and says “Hajjo Mamma.  Ekke wakke.  Ekke djink mie-ja-oe-kies (melkies).”

08:00  Everyone is dressed and we hit the road to my parents.

09:00  I arranged authorization from Discovery (medical aid) for today’s repeat performance and Boeta and I drive to hospital.

10:00  I have to redo the whole admission procedure at hospital.  And like yesterday I get a new staff member.  The old ones see us walking through the doors and start prepping the things so long.  These new ones take forever and doesn’t understand that I know more about their procedures than they know themselves.  Eish.

10:30  Boeta makes himself comfortable in his hospital bed.  Shoes off.  Socks off.  Get into bed.  Pull duvet up to chin level.  Lie back.  Watch DVDs.  Toddler heaven.

11:00  Nimpie (Sr Harris) tries to inject heparin/saline mixture through his Broviac.  Yesterday she couldn’t get anything in.  Today it flows.  With some resistance, but it works. 

11:20  Nimpie can’t get a single drop of anything back through the tube.  We decide to run some saline through the line to see if it improves the flow.

12:00  The saline runs very well (100 ml/hour) with no back-pressure.  They decide to run the Vincristine next, whether we get bloods done today or not.

12:30  Vincristine finishes and is flushed with more saline.  Nimpie tries to draw blood and it works like a charm.  Prayer works, people!  We leave as soon as possible

13:00  We get to my parents’ where Boeta decides to take a nap with my dad.  They’ve been bed-buddies since Boeta was a couple of months old.

13:30  Debbie (staff nurse Kluyts) phones.  She tells me to get back to hospital.  Boeta’s Hb is 6.4 (!!!!!) and he needs to get a transfusion today.  We didn’t draw blood for cross matching this morning so we have to go back to get the blood drawn.  Woutertjie wasn’t asleep yet so off we went.

14:10  Nimpie draws the blood.  It goes very well.  We rush back home.

14:40  I drop Boeta off at my parents’ and rush to Durbanville for my 15:00 appointment. 

16:30 I get back to my parents’.  The blood isn’t ready yet.  Nimpie will phone when we have to go back.

17:15  Wouter arrives at my parents’.  We have coffee, Nimpie phones to say that it is time and Wouter and Boeta goes to hospital.  Carien and I go to our home.

18:30  The transfusion starts.  It will run for 4 hours.

22:15  Wouter says Boeta has been asleep for 2 hours already.  As soon as the transfusion ends they are coming home. 

23:30  The boys finally get home. 

Not bad for a day where nothing was supposed to happen, né?

Oh, by the way, Boeta is in isolation again.  His white cells are 0.4 and his platelets around 90.  At least his mood should improve after the bag (240ml) of “packed red blood cells”. 

Good night everyone!

Yes, I am back

Hallo everyone.  I am finally back in the saddle.  It feels quite strange to start blogging again.  I feel clumsy and I can’t get the words and the “feel” of what I try to say right.  That’s what you get for taking 10 days off. 

Can you believe it has been only 10 days?  It feels like forever.  My modem is seriously on its last legs and has been for a while.  I get booted off so often that I decided to give my blood pressure a break until I can get a new modem.  Then life happened and now I still get booted off and I still have to wait a full minute for the Google homepage to load because I still haven’t gotten a new modem.

I’ve started filling in the gaps – during the 10 days that I’ve been off Carien turned 2, Boeta had his Reach for a Dream event, we had chemo and it was just general chaos.

Today I took Boeta for a quick full blood count and then Vincristine (15 minute chemo).  Ha!  Ha!  It just goes to show how naive I still am.  I still haven’t learned to expect the unexpected.

Today, like two weeks ago, Boeta’s Broviac decided to give trouble.  It is once again completely blocked.  Nothing in, nothing out.  Last time it came right on its own – we suspect it has something to do with the positioning of the tube in his jugular.  When it wouldn’t work today I decided to take Boeta for a walk and a run and a jump to see if it would move the line and get it working.  No joy.  In the end I made the executive decision (I am The Oncomom – don’t mess with me) to leave and return tomorrow. 

It was a very hard day on me emotionally.  Woutertjie has his favourite positions to lie in when they work with his “pypie”.  Sitting on my lap with his head lying back on my shoulder or lying on his back with his shoulders slightly raised and his head thrown back are the two winners – they usually work.  He doesn’t like lying on his side with his arms above his head, coughing, sitting up with his arms up and all the other positions.  Today was no different.  He wanted to lie down and that’s it.  He got quite upset about it. 
And then it all changed.  I managed to explain to him that the Broviac wasn’t working and that they had to give him a drip if they couldn’t get it to work.  In a flash he was sitting, lying and posing in all possible positions without complaining once.  He even raised his arms above his head without being asked.  He was doing everything in his power to prevent having to get a drip.  He was so grown-up about it it just broke my heart.  Children shouldn’t know about things like this.

When the only option left was to put a drip in I decided to go home.  How was I going to explain to him that even though he did everything we asked him to do, we were still going to give him an “insteker” (injection)?  I can’t do that.  I can’t and I won’t and it  just . is . not . right. 

Please say a prayer for Boeta.  Tomorrow they are going to try the Broviac again and if it still doesn’t work it will have to be removed.  Then we are back on drips until he can get another one.  I can’t see my child going through the trauma of needles again.  Not for something that can be avoided. 

I’ve been holding him down since the day that this started – for drips, for drawing blood, for booster injections.  And now, 8 months later, I have reached my limit.  I just can’t see him getting hurt anymore. 

But if he should have to get a drip, I will be there.  It is my job.  I am The Oncomom.

Reach for a Dream

What a fabulous day!  The rain stopped just in time and we had so much fun!  I still can’t upload videos.  If you want to see I’ll email you! 😉

Boeta is absolutely infatuated with trains at the moment and has been this whole year.  So the Reach for a Dream people arranged the most awesome day for him.

Western Province Live Steamers is situated in Parow in Cape Town (about 2km from Panorama MediClinic where he is being treated).  It is the most amazing place.  A lot of train enthusiasts build and operate miniature trains there.  Built exactly to scale, they have to make every single part of the trains themselves.  The first Saturday of every month they have open days.  Whenever possible we are there!  The downside is that there are very few first-Saturday-of-the-months that Boeta’s white cell count is adequate for him to spend time in the company of lots of strangers.  So in this whole year we only managed to go twice.

Today they opened up just for us.  We had such fun! 

Boeta and I waiting with Bernard for the first train to arrive

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Getting all steamed up.  My mom and sister Liezel (Lielie) are ready to go.  Carien is on her way to Ouma to demand a ride!  The Reach for a Dream ladies are taking photos.

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A closer look at the steam train that we used.  There are about 70 of them, all different sizes and shapes.  It took 5 years to build this one.

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The train needs to be filled with water and coal.  Boeta always watched from afar, but today he could participate.  He was a bit skittish at first…

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… but before long he was helping.  The train drivers were wonderful with him.

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A closer look.

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The tiny pressure gauge is the only bought part on the whole train…  Look at the coals burning!

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Boeta assumes the co-driver position.

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A regal wave before leaving.

Co-driver waves goodbye

From left to right we have Tiesies, her boyfriend Fanie, Carien, Lielie (standing), Berno, Adriaan, Boeta and the driver.

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The kids ready to go again.  In fact, Adriaan didn’t get off once!  After every trip, as the train started decelerating to pull into the “station”, Adriaan started complaining…

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Berno probably enjoyed the outing even more than Adriaan.  But while Ada spent his day riding, Berno checked out the railway system, looked at the technical bits and took photos…

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Tiesies trying very hard to take a picture with everyone looking in the same direction at the same time.  More difficult than it sounds…

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Boeta being shown how to drive the electric train.

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Doing it by himself.

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Pulling into the station.

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Boeta received a whole bunch of presents from Reach for a Dream, sponsored by Pick’nPay.  He put his Bob the Builder stuff on immediately and started referring to himself as “I, Bob the Builder”.  Nothing wrong with his imagination!  He also received the most awesome Thomas the Tank Engine train set.  He has a set already, but this is the big daddy one.  And best of all, they got him a Thomas that actually steams.  He hasn’t stopped smiling and our whole house is full of tracks.

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This photo was taken about 10 minutes after we left the trains.  He was so tired and so happy.

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Thank you so much to Reach for a Dream, Western Province Live Steamers and everyone involved in making today so very special.  We appreciate it more than words could ever say.

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The coordinates are 33°53’41.32″S  18°34’33.21″E according to Google Earth.  Go visit them.  You will love it.