Uhmmmm. Uhmmmm. Uhmmmm

Yup, I am still uhmmmming.  If I stop I may just confront reality and that is out of the question.  I’ve disowned reality a long time ago.  I prefer to live in my version of it.  Let me tell you why.

In my version Carien doesn’t have bronchitis.  Therefore she doesn’t have to take antibiotics.  Since she spits medicine across the room in the real reality my version is just so much less messy.

In my version Boeta wasn’t diagnosed with pneumonia today.  In my reality we were going to go home today.  In the real reality we are probably going to stay in hospital until next week.

In my reality my insurance company didn’t take 3 weeks to process my income insurance claim.  In my version of reality I have more than R58 in my account today, the last day of the month.  Tomorrow my debit orders are going off and I am going to have to bat my eyelashes at Wouter in an attempt to get him to transfer money to my account.  We aren’t hung up on who pays for what but it isn’t nice having to rely on him to pay for my telephone, etc.  I don’t know what I am going to do when I am a “proper” housewife next year with no income.

See?  My reality is so much more fun.

You know what the strange thing is?  I am as calm as a newborn after feeding time.  And burping time.  And cramping time.

On second thoughts, I am calmer than a newborn.

Life is good.

Dit dan dit

I am quoting Lize Beekman again. (The subject translates to “this then that”.)

When I look  with a logical eye at our current circumstances I know that it is heavy going.  And yet I feel calm, collected and very zen. (I say uhm a lot -that could mean that I am slow, but I prefer to think it means that I am calm and collected.  I’ll pass on the orange robes and baldness though.  And I am scared of heights so the levitation won’t work either.)

Boeta has been in hospital since Friday, so this is our 5th day.  He is very phlegmy and the constant post-nasal drip makes him nauseous.  He eats a spoonful and then vomits it out after a big coughing spell.  Gerrit has decided to start him on TPN (nutrition via a drip) again.  I think it will do him good.

Feverwise Boeta is also doing OK.  It is mostly normal but occassionally goes into the 38C range.  On the down side, the persistent fever could mean that his Broviac is infected.  He is already on 3 types of antibiotics (Piptaz, amikacin, vancomycin) and tonight they added diflucan too.  The nutritionist says his liver counts are slightly off.  With everything that gets pumped into his little body, no wonder.

He received a Thomas the Tank Engine “gift pack” from England today.  One of the children being treated at Panorama is Justin (6m old).  He was diagnosed with liver cancer (hepatoblastoma) at 3 months old and is doing exceptionally well.  His mother, Tania, arranged for him to receive a goodie bag with Thomas clothing, sweets and other stuff.  Most important of all, in Boeta’s estimation, is the Thomas whistle.  It is a train-shaped wooden whistle that sounds like Thomas’ whistle.  The whole oncology ward could hear “Thomas” starting and stopping the whole day long.

He received his 4th GCSF booster injection today.  I am amazed at how well he took it.  He complained a bit, but mostly held his leg to get it done.  Mostly…

So in short, Boeta is getting better.

Carien on the other hand is not so well.  She has bronchitis.  Fortunately only mildly.  She’s had a cough for a few days now but this morning my mom phoned to say that she has a fever of 38.5C.  Gerrit thought it best to see her, just in case she had something that Boeta could later catch from her.  Wouter is my favourite man in the world ever.  But he is facing stiff competition from Gerrit.  Gerrit is very high on my favourites list.  Partly because he told me that Carien is beautiful and partly because he squeezed her in today and with any luck she may be over the worst before Boeta can come home.  Because if she is still sick when Boeta can be discharged, Boeta will not be discharged.  There is no way to keep them apart at home and if there is a risk of infection it is better to have them in seperate buildings 15km from each other.

In other news.  I am watching a woman who shouldn’t sing, sing.  It is painful.  SABC3 please get her off the box. 

I am now going to pack it up.  Wouter is giving me all sorts of grief from the side.  He thinks that I am a basket case.  I think I agree. 

W:  If it makes you feel better, you are a picnic basket.

Speak to the hand, my dear husband, speak to the hand.

Making up my mind

Should I write an optimistic piece tonight or a contemplative one?

Should I tell you about how much better Boeta is or about how sick he still is?

Should I explain that I am feeling a lot better than last week or should I forget that I feel better and wrap myself up in self pity?

I don’t know either.

On the one hand I am feeling calm, centred and in control.  On the other hand I want to cry myself to sleep.  I don’t get it.  How can I be both happy and sad?  And I really am in a good place at the moment.  Why do I confuse the issue by thinking too much and depressing myself?

I just don’t know.

Saturday Night Fever

It is Saturday, it is night and Boeta has fever.

Welcome to our type of weekend.

This morning we had a reunion of the extended family of my grandmother on my mother’s side.  The Cillié troops pitched up in droves.  It was interesting to meet my mother’s cousins for the first time.

Wouter stayed with Boeta in hospital.  While Carien and I were reunifying ( 😉 ) he phoned to tell me that Boeta was getting another red cell transfusion as his Hb was 7.0 today from 7.4 yesterday.  In other words, it went down even after he received a transfusion.  It is very good that he got blood yesterday otherwise we would’ve had a huge problem today.  His platelets are OK now but his white cells are still on holiday.  He started with GCSF injections again today.

But all of that is still managable.  The problem is that his fever is getting worse.  It responds well to Panado (or the IV version, Perfalgan) and Ponstan, provided we can get him to take it.  Unfortunately, before his is due for his next dose the fever starts up again.  This afternoon it spiked to 40.5 degrees.

Added to all of this, Boeta has a nasty cough and is constantly nauseous. 

I suspected that we might end up in hospital by now but I didn’t count on Boeta being this sick.

OK, OK, I didn’t update on Wednesday

And I didn’t update yesterday either.  But I can explain!  Promise!

Wednesday just didn’t happen.  We went for after-work coffee at my brother’s.  His wife is 8 months pregnant with their first child.  It turned into a braai and a very late night.  By the time we got home it was Thursday already.

Yesterday my uncle got married.  For those outside South Africa, it was a public holiday.  Since Woutertjie is neutropenic he stayed with Neels and Verna and most importantly, Hanré.  During this year they too have learned everything about germs and immunity and chemo.  So they were a logical choice since everyone of my family went to the wedding.  Boeta was so excited!  Carien was very upset that she couldn’t stay there too…  It was a wonderfully beautiful wedding.  I will post a picture if I manage to get hold of one.

Yesterday at 16:00 Boeta wanted to have a nap.  We didn’t think a lot of it since he usually naps every day.  We started raising eyebrows when it became time for us to get to bed and he still slept…

Wouter shared our bed with Boeta.  Carien and I slept in Boeta’s room.  He has been very nauseous since his last chemo.  He has had a cold (rhinovirus) for the last 10 days or so and the resulting post-nasal drip definitely adds to the nausea.  On Thursday morning he blessed Wouter with an early morning earful of vomit.  That is what happens when you sleep with your chemo-child and he doesn’t manage to reach across you when the urge overtakes him…  It is a very good thing that Wouter’s hair is shaved off.  This way he could wipe himself down and get it over with.  Can you imagine having to wash that mix from your hair?  Grrrrr.

Either way, his carpet took the brunt of the abuse and still had an overwhelming aroma of Eau de Chemo.  We didn’t want Boeta to sleep in the room with the windows wide open so the guys got our room and Carien and I cuddled up on Boeta’s bed.

This morning at 07:30 Boeta woke up and promptly decorated our bed and carpet in a similar way…

After giving him a Zofran I asked what I could do to make him feel better.

B:  Let’s choose – do I want milk or do I want to go to the tannies (literally, the aunties).

S:  Boeta, let’s choose.  Do you want to have some milk or do you want to go to the tannies?

B:  I want to go to the tannies and then they have to look at my blood and give me medicine to make me feel better.

When your child sleeps more than 15 hours straight and then asks to go to hospital, you take him.

Gerrit saw Boeta, did a general check and sent us for blood counts, as I knew he would.  We agreed that Boeta would need red cells even before we saw any results.  Looking at how tired he was it was easy to guess.

Sharon drew the bloods and we went home.  About 30 minutes later Gerrit phoned with the results.  I don’t think we’ve ever received it this fast.

Hb  7.4

white cells  0.08

platelets  3.7

Yes, I triple checked and I typed correctly. 

Since we are VIPs at Panorama (or act like we are) I phoned the admissions desk and asked them to do the admission so long.  They can’t order blood without an admission number.  Thank you Lezanne – you really made it easier for us.  When we got the call that the blood was on its way we drove to hospital and as we walked in Lezanne waved me over, I signed and off we went.

They started with the platelet transfusion as that is the more life threatening condition.  Just before they started I noticed that Boeta was warm to the touch and hey presto!  He was running a fever of 38.7.  So instead of staying overnight for transfusions and then going home, he now has to stay until the fever is history.

I spoke to both Gerrit and Cristina tonight.  As soon as the transfusions finish he will start on all sorts of antibiotics while we wait for the results of the blood culture. 

Moral of the story?  There is no way that we are spending this weekend at home.  But we expected as much and we will deal with it.

Today I am not updating

I realised that I always update on Tuesdays but seldom on Wednesdays.  So today I am not updating so that I will have some news to share tomorrow.

OK, today was a very quiet day and I don’t have anything to tell you.  But I am sticking with my humanitarian explanation as stated.

See you tomorrow!

Week 35 – 21 to go

Today was one of those weird ones.  A couple of nice things happened, lots of not so nice things happened, but my overwhelming feeling when I think about today is peace.  So I think I am going to label it as a nice day.

Boeta and I made the weekly trek to the hospital for a full blood count today.  His counts were done on Wednesday last week and it was OK.  Today not so much.  His Hb is 8.6, white cells 0.5 (neutrofils 0.27) and platelets 70.  In other words, all of them are low.  From experience I expected everything to drop this week but I didn’t expect the white cells to take such a knock.  This is very inconsiderate.  We have a very social week and weekend ahead of us and this does not fit in with the plans.  Do you think I could appeal to someone?  Just don’t say I should take it up with Cristina or Gerrit.  Gerrit will give me The Look and Cristina will have to take “two Panado and a glass of wine”.  For the shock, see. 

I laughed so much this morning.  I bought some summer clothes for Carien.  She got hold of it and walked into our room holding a lime green pair of shorts.  She held it up for me to see and said “Mamma!  Sussie bjoek!  Ag beee-aaa-uuu-tiful!”  Take a guess what her mommy’s new favourite exclamation is?  She is such a girl.

Boeta is in a foul mood.  The combination of adapting to life at home and falling blood levels aren’t doing him any favours.  Carien is constantly finding herself on the wrong side of his temper.  But not to be outdone she has started to retaliate.  I am officially the UN in the middle of a war.  Spare a thought for my (already strained) sanity.