Day 6

For the record, prayer works.  But then, we should know that by now.

This morning on my way to hospital I begged God to bless Woutertjie with His healing power.  I’ve been lax the last while.  Boeta has been doing well, making it easy to “exclude” God from our day to day business.

And you know what?  Today has been miraculous. 

Firstly I met Gerrit on my way in.  We chatted for a bit.  I’ve been feeling very guilty for “allowing” Boeta to get sick.  Why didn’t I keep him and Carien apart as soon as she started developing a cold?  Why didn’t I keep Boeta masked the whole time at home?  And Cristina has been fueling my guilt trip even more.  She has read me the riot act about neutropenia and prevention of infection. 

Gerrit derailed my guilt trip train completely.  He decided that I should blame him, since I informed him when Carien started getting ill and he could’ve done something about it then already.  So officially I am laying the blame at his feet.  It is good that we aren’t American.  Gerrit’s parting shot was:  “So sue me!” 😀

Today Boeta is off anti-nausea meds, off fever meds and he hasn’t been nauseous and his temperature has started dropping this morning.  By tonight he was just about fever-free.  What a blessing!

His rash has also started disappearing, although his cheeks, arms and legs are still covered.  Since his platelets are lowish (46) he has pinprick marks all over his face and scalp from coughing.  It is freaky to think that coughing can cause bleeding…  But his coughing is a lot better, his nose is less runny and here is the clincher – today’s nasal wash is negative for RSV!  This is wonderful news as it means that the virus is now out of his system. 

After 5 days of GCSF boosters Boeta’s white cell count is 0.4 today.  It is starting to climb.  His Hb is low though (6.8) and he will get a blood transfusion tomorrow.  It will be his 6th. 

By tonight Boeta had eaten (shock, horror! :-D) almost 2 hotdog buns with tomato sauce.  He asked for “so ‘n ronde bans met matiesous”.  It is a good thing I am the mommy otherwise I wouldn’t have understood what exactly he wanted!  I have to add that he got some tough love today.  The nursing staff are making “sterk stem” with him, telling him to eat or else.  So he is eating.  I am the good cop in all of this, choosing his side and begging him to eat so we won’t get into trouble with the nurses.  So far it is working and that is all that matters.

I have to brag with Carien now.  2 days ago my mom and Carien (1y9m)were stuck outside their automatic gate without a remote.  So my mom lifted Carien through the gate and told her to go and fetch the remote in the house.  Lo and behold, she dodged the dogs and the next thing the gate opened for my mom.  Carien didn’t even bother to bring the remote to the gate, she simply opened the gate from inside the house! 😀 😀  That child is too smart for her age.

She misses Boeta something terrible.  She is constantly asking about him or telling us that he is in hospital.  My poor baby.  She adores him and is feeling very lost without someone to copy.

But we are good.  Very good.

With any luck we may get out of hospital before Boeta’s 5 day chemo starts in a week’s time! 🙂

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OK, I am not amused anymore

Right at the start of this journey we were warned that our family life, emotional stability and marriage were going to take some hits.  Yeah right.  Some hits.  That’s like saying T Rex was a large-ish lizard with socialisation problems.  This is way more than “some” freaking “hits”.

This weekend has been the last bloody straw.  I am fed up with my children, I am fed up with my husband, I am fed up with trying not to swear while I write this.  (There are children who read this blog.)

Carien has decided to not have the common cold, but rather spice things up with a bit of croup thrown in.  I understand that she is feeling like crap.  She has had a fever since yesterday, her throat is obviously sore, she is generally feeling sick and is even more clingy than usual.  That should not be possible without the addition of large quantities of superglue but she is managing it.  All of this I can understand and I am doing everything I can to make life easier for her.  Do you think she could do me one tiny favour and swallow the medicine that I’m trying to give her?  Oh no.  She’d rather scream, fight, spit and not swallow a single drop.  And then afterwards, while I am still trying to wipe the drops of medicine off my face, she wants to be cuddled and comforted.  I don’t feel like even looking at her after she just about bit my fingers off.  But I have to.  Because I’m the mommy.

Boeta’s haemoglobin is very low (7.8) and yet he seemed to come to peace with it today.  He was a lot easier to be around than yesterday.  So imagine my irritation when Wouter went on a pity-party because Boeta wanted his constant attention.  I’ve been trying very hard not to tell Wouter “welcome to my life” when he comments on how emotionally draining the children can be.  But indeed, welcome to my life!  This is my reality.  I get very resentful when Wouter seems to assume that the children aren’t like that the whole day long.  At least on weekends the adult to child ratio is 1:1.  It is a whole lot worse during the week when I have to try and split myself into half to satisfy them both.  So where exactly does Wouter get the right to get resentful because he hasn’t had time to do anything for himself today? 

I bought soft rolls today.  I stood in a queue to get fresh rolls because the prepacked ones where stale already.  I didn’t feeling like queueing but I did because I wanted soft rolls.  Wouter opened the bag by tearing a hole in the side.  And then he tried to play the innocent, falsely accused victim of constant abuse.  According to him he only tore the bag open like that (completely un-resealable) because he was going to repackage the rolls in another bag.  Right.  Tonight after he went to bed I had to take the (by now half-stale) buns and put them in another bag. 

I feel like I keep on giving and giving and no-one even notices.  I feel wrung out and old, old, old. 

It is at times like these that I am very grateful that we started off with a strong marriage.  Even though Wouter at times irritates the living sh daylights out of me I still wouldn’t want it any other way.  He can be an irritating swine but he is my irritating swine.  And I love him.

And Babes, if you want to state your side of the story, get your own blog.  Hah!

After 12 days in hospital, we are home

This morning at 07:00 I arrived at hospital, woke Wouter up (he had to be at work at 08:00) and brought him coffee in bed like a good wife should.  Before he managed to finish his coffee Cristina did her rounds.  She is satisfied with Boeta’s condition and discharged us!

We had a long chat with her about the rest of Boeta’s treatment.  She is of the opinion that more anaesthetic is going to do more harm than more radiation is going to do good.  If Woutertjie was able to lie still on his own for the treatment she would’ve considered more radiation but for now at least it is off.  Done.  Finished.  We are continuing with the chemo as originally planned.

Tomorrow afternoon I am taking Boeta for a pre-weekend check-up by Gerrit and then we should be home until Monday when Boeta gets Vincristine.  For the non-chemo people, Vincristine administration is fast and we should be out of there within an hour.  Then we are off for the rest of next week.

It is amazing what a bit of home life does for the appetite.  We had to beg and cheat Boeta to have nibbles in hospital.  Since we walked into my parents’ home he has been eating like a caterpillar.  I tried to restrict him to small portions so that his stomach doesn’t rebel but that ship has sailed.  He ate a slice of bread with cheese, drank a bottle of milk, insisted on more bread and cheese and then polished the lot with more milk.  He ate more in 2 hours than he did in the last 2 weeks.  Go figure.

At the moment Boeta, Carien and Phillip (a 7-year old) are chasing each other through my parents’ house on those noisy plastic scooters and having a ball.  I can’t get my head around his transformation since we left the hospital a mere 3 hours ago.  Earlier this week Cristina said that Boeta is a bit too young, otherwise she would’ve started him on anti-depressants already as he is obviously depressed.  Looking back I can see how right she was. 

Comparing that picture of Boeta that I took a week ago with the Boeta of today, I struggle to deal with the change in him.  That photo was taken when he weighed 15.4kg.  His weight stabilised 2 days after the TPN (IV feeding) was connected and since Saturday he is gaining weight.  He is now about 16.4kg.  A miracle. 

Looking back at the last 2 weeks I can see the Hands of God around us.  Thank you Lord.

The blessings are raining down

Once again we are being blessed beyond our wildest expectations. 

Incidently, Cape Town is in the midst of an impressive storm.  It is pouring, the wind is howling, it is a typical Cape Town winter.

This morning Woutertjie wasn’t in the mood for anything.  He was down.  At 12:00 I told the nurses that I planned on kidnapping Woutertjie for a couple of hours between his antibiotic treatments.  At 13:00 the paediatrician signed off on our excursion.  Did you know that you have to get a doctor and a nurse to sign the temporary discharge form?  I know you wanted to know that.  Just file it away for future use.

Woutertjie is suffering from Stockholm syndrome or something like it.  When I told him we were leaving he got terribly upset and kept on telling me that he didn’t want to go immediately.  We could go later.  It took a lot of persuasion to get him onto the wheelchair and out of the ward.  All his objections vanished as soon as he saw the car.  He’d perked up before we left the hospital grounds.

He spent his whole out-time sleeping behind my dad’s back.  It has been their routine since forever.  It is a hard life being the grandfather – my poor dad has to take a nap every afternoon with Boeta.  Woutertjie was very upset when we had to go back to hospital.  On the way there he overcame his objections and accepted it as a normal part of life.  I wrapped him in a huge blanket when we got to the hospital and he sat pretzeled-up on a wheelchair while I parked the car.  He was so wrapped up that I couldn’t see any bit of him – it looked like a pile of laundry or something!  He loved it when we arrived in the ward and Sharon, the staff nurse on duty, played along with the “Woutertjie didn’t come back, there is only laundry on the wheelchair, no wait this laundry is moving, it is Boeta!!” game.  Sharon is a star.  She has such a knack with children and always plays along.  It makes her a family favourite!

Boeta looks like a different child tonight.  He has some of his sparkle back.  He insisted on sitting on the floor playing with his train set, climbing over the tracks to change the points.  (Points are the bits that make the train turn off onto a different track – I’ve watched a lot of Thomas the Tank Engine.)  He even told me I couldn’t kiss him.  That is code for “tickle me please”!  He still isn’t eating much but we will get him back onto food eventually.  For now all that matters is that he is feeling better.  Obviously the IV feeding and the antibiotics are doing their bit.

You may wonder where Wouter was during this eventful day.  He was sleeping.  From 10:00 to 17:00.  He claims that it is because he spent last night with Boeta in hospital.  I think it is because it was cold and rainy and a lot nicer in a warm bed than out of it!  😀

Warning…warning…warning

Today I am going to be arrested.  If I hear one more nag, whine or peep from either one of my children I am committing murder.

I made the mistake of missing one day of my antidepressants.  Those of you who are on it will know that it takes 2 – 3 days for the effect of a skipped day to hit.  I am on the verge of suicide / child-icide / spouse-icide and if I knew someone named Herb, herbicide as well.  Wouter is treading lightly around me – he knows that it is time to keep a low profile.  He did however offer the opinion that the way I am going I will soon have enough names for seven-a-side.  *insert rolling eyes here*

Woutertjie had a big vomiting spell last night again.  He was still looking well last night but this morning I can see that he will need fluid.  So we are cutting our Pringle Bay visit short and will return to Cape Town immediately after lunch.  I spoke to the oncologist and she wants us to take him to hospital as soon as we get to CT.

Woutertjie isn’t eating or drinking anything today.  Yesterday we could still tempt him with two or three chips and a sip of cooldrink but today nothing.  He is feeling miserable.  I expect that he will have to stay over tonight for rehydration.  Will let you know when I know.

Another change of plan

I wrote this on Saturday but couldn’t post it because I couldn’t connect to the internet.  I am posting it today, Tuesday, but decided to file it under Saturday for clarity.

This time of our own doing.  Late on Thursday afternoon Gerrit de Villiers (paediatrician) let slip that he thought that we are sorely overdue for  a weekend away.  Those weren’t his exact words but I decided to interpret what he said as a command to start packing.  Yesterday Woutertjie had his chemo & anaesthetic combo meal with a single helping of radiation on the side for the last time.  Next week and the week after he will not receive any chemo.  He is receiving radiation every day next week and then Wednesday and Thursday the week after.  And praise the Lord, then we are done with this chapter of treatment.

I planned on uploading the photos of Woutertjie’s radiation sessions this weekend but we eloped to Pringle Bay (where Wouter’s parents live) and there isn’t broadband reception here.  What bliss! 😀  I will upload from home.

Woutertjie has been doing OKish.  He had a great big vomiting spell last night but has been eating and drinking “successfully” today.  At least part of that is because I keep him drugged up on anti-nausea medication.  In hospital he gets Zofran (ondansetron), dexamethazone and Maxalon.  At home we have dispersable Zofran, meaning that the tablet melts in Woutertjie’s mouth.  It costs R550 for 10 tablets.  He gets half a tablet every 8 hours.  The medical aid only pays a portion of the cost as it isn’t a generic medication.  This is the one expense that we pay with a smile.  It works almost immediately and I would pay anything to have Boeta feel better.

This afternoon, midway through his nap, I popped a Zofran tablet into his mouth.  It is now17:00 and he hasn’t vomited yet.  Let’s hope it stays like that because if he starts dehydrating we will have to hit the road to hospital earlier than expected.

We went to watch the penguins in Betty’s Bay at sunset when they all came in from the sea.  The children loved it!  Carien was calling the “wyne” (penguins are pikkewyne in Afrikaans) and Woutertjie was running along on the boardwalk like he was as healthy as anything.  Considering that he ate almost nothing today I am in awe of his energy.

Can you feel it? Can you see it?

I’m doing a happy dance!!!

Gerrit ( I love you, I love you, I love you!) suggested that we go away this weekend.  Hey, if your child’s paediatrician thinks he is fine to travel you don’t wait around for him to change his mind!  So tomorrow we are off to Wouter’s parents in Pringle Bay.  It is about an hour’s drive from here and the ultimate rest spot.

Boeta’s FBC this morning:

Hb 10.1 (we can see the difference)

platelets 330 (or something like that)

white cells 2.4 (!) of which neutrophils 0.6

We will be in semi-isolation with no visitors but at least we will be away from home.  Can you feel my excitement?

The last time we visited Wouter’s folks was end November / start December and we were on our way there for Christmas when Boeta was diagnosed.  It has been a long time.

Gerrit will let us know when we should report at the hospital again.  I will let you know when I know.

For now I am off to start packing.  Yes, it is only 16:30 on Thursday but I’m excited, OK?