No surgery!

Yes, there is a connection between Wouter’s silly smile and me not updating the blog yesterday. 

Gerrit (paediatrician) phoned yesterday to say that Dr Sidler, the paediatric surgeon, decided that it wasn’t necessary to operate on Woutertjie.  This is such fabulous news!  Surgery is always a risk and since they were planning on taking biopsies there was a significant risk of bleeding.  Praise God!  We’ve been so blessed throughout this journey. 

So yesterday I was walking around with a silly grin and I spent so much time on the phone that I didn’t get round to blogging.  Of course it didn’t help that I put Carien in bed at 20:00 and she promptly put me in bed too.  It has to be her fault, right? 

I never get a chance to to anything on the computer with the kids around.  Woutertjie wants me to stop everything and let him play internet games (Thomas the Tank Engine) and Carien wants to watch pictures of babies.  And they want to sit on my lap at the same time.  Fun times!

We went for a full blood count today and according to Gerrit the results are good.  He couldn’t give me the exact numbers though – they phoned him with the results and he couldn’t remember the exact counts.  Shame on him.  But Boeta’s counts are good – we can see that from his behaviour too.  He is running, playing and eating, eating, eating.  I love it!

Gerrit also told me today that the medical aid denied parts of Woutertjie’s next treatment.  The expensive parts.  I contacted them and it seems to be an administrative issue between the oncologist & radiologist and Discovery at the moment.  The drug that was denied is the R35 000 per ampoule one that I told you about.  And the radiotherapy is also very expensive.  Please pray that it gets sorted ASAP and that Discovery will pay.

Fuel for the soul

What a weekend.  I’ve seldom enjoyed a break as much as I did this one.  And there isn’t any 3G reception at Pringle Bay so I even though I tried I couldn’t update the blog.  Did you miss me?

Wouter’s parents are retired and have been living in Pringle Bay for the last 10 years or so.  Their house overlooks the whole of the town-let (it is way too small to be a proper town).  Walking out of the front door you face a very steep downhill to the main road and the beach.  Walking out the back door you stub your toe on mountain rocks.  It is heaven.

If I am lucky Wouter is going to bring me some tea ….. NOW.

Anyway.  Back to business.  Japie (Wouter’s brother) & Zani were there with their two sons.  The boys and Carien had so much fun!  It is the first time all four of them have been together since last year.  Since we live about 20 minutes apart we saw each other a lot more before Woutertjie’s immunity became an issue and they are very close. 

It was so relaxing to spend the weekend with everyone aware of the do-s and don’t-s.  Japie and Zani are both doctors so they understand the immunity, bleeding, etc issues.  Wouter’s parents have been very involved during our journey (Oupa Skippie usually sleeps over with Boeta in hospital) so they too know the rules.  It is a lot easier when we don’t have to explain why certain things are allowed or not allowed.

Wouter and I both had a Moment when we turned into James Street, Pringle Bay on our way there.  It has always signified arriving because it is just a hop and a jump to the house from the turn.  This time we both thought of our Christmas plans and how things turned out so differently.  I kept on hearing myself on the phone telling my mother-in-law that we are a bit delayed but we are sure to leave soon.  Then later telling them that we would leave the next day, on Christmas Eve.  And then calling them with the news.   You know how people talk about your life flashing before your eyes?  I had the last 3 months flashing by.  It was very emotional for me.

The break did Boeta the world of good.  Gerrit told me weeks ago that he thought a part of Boeta’s lack of appetite was depression-linked.  Once again he was right.  As soon as he saw his cousins and started living like a real boy again Boeta started eating everything he could lay his hands on.  I never knew such a tiny body (he is 104cm tall and weighed 19.1kg when diagnosed – he was down to 16.4kg on Thursday) could eat so much!  He had two bowls of ProNutro for breakfast Saturday morning and kept it going for the rest of the weekend.  He had two large bags of chips between breakfast and lunch this morning…  If he didn’t gain weight this weekend I am sueing Simba for false advertising!  He told me a couple of times that he didn’t want certain things because he was scared of it as it was going to make him nauseous.  But he certainly wasn’t scared of NikNaks – he had 3 small packets on our way home.  He didn’t really feel like supper.  Imagine that!  😀

I was so impressed by Dewalt, Boeta’s older cousin (5).  He seemed to know that Boeta shouldn’t be played with too roughly.  Before they loved each other passionately and hated each other cordially.  There were loving shoves, adoring slaps and playful collisions.  This weekend they chased each other and played rough boy-games but all the while Dewalt did the rough things and smoothed the way for Woutertjie.  He went out of his way to protect Boeta.  That child is very special. 

On Saturday morning I told Wouter that I expected an emotional breakdown during the weekend because of all the emotions and thoughts and everything just piling up.  Strangely that never happened.  Instead of falling apart I was simply built up.  The peace and quiet combined with Woutertjie starting to eat without stopping to swallow did wonders.  I feel strong and ready for the coming week.

The coming week the operation to have a look at the origins of the tumours and place radiation markers at those places will take place.  Please pray for wisdom for all the doctors involved.  Any operation is a risk and Boeta needs your prayers.

The day before the operation we will have Boeta’s 4th birthday party.  His birthday is Sunday, 5 April but that will be right after the surgery so we are doing it before.  He has ordered a Mater cake (from the movie Cars) with a tow hook that pulls Lightning McQueen along.  We made him a Mater cake for his 3rd party as well but it is fine with me!  I know how to make a Mater cake!  We are only inviting his two cousins and his two bestest bestest friends, Hanré and Loedolf because of immunity issues.  Next year we are inviting everyone we know! LOL!

I have another computer now so I can start uploading photos.  And while I spent the whole weekend thinking about how things changed, here is a before picture.  It was taken 18 December 2008 with Boeta’s best friend in the world, Hanré.  He was healthy and chubby and doing well.  And he needed a haircut!  Less than a week later he was a cancer patient with, according to the doctors and nurses, less than 5% chance of survival.  They only told me this bit recently and I am eternally grateful for that.With Hanré 18 December 2009 (5 days before diagnosis)

Please join us in prayer, thanking God for keeping our son in His hands.  Thank You God, for healing our ray of sunshine.  Thank You for being our merciful Father.

 

PS:  Wouter did bring me some tea.  I love you!

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?

The only constant is change

Today I want to talk about angels. 

As I was driving to hospital this morning I was really down.  Carien is still struggling with her tummy and Woutertjie was really miserable this morning.  For the first time ever he cried about going to hospital.  He was so tired.  Since Monday I had to pull every stunt I know to get any food or drink into him.  And then usually it came out soon after.  I didn’t know that chemo could cause nausea so long afterwards.

Boeta was obviously tired yesterday already but this morning he was exhausted from when he opened his eyes.  He pulled himself into a little ball and kept on saying that he was hiding.  Hiding from the light, hiding from the krokkenoster, hiding from life.  Just getting him up from the floor where he was hiding (under our bed, no less) was an issue.  Getting dressed only worked once I really raised my voice, told him that he could stay while Carien and I were leaving and walked out of his room.  My poor baby.  He isn’t used to raised voices or threats of being left behind.

Once I got him into the car it was better.  He was happy to go to hospital, provided that we did “belowe belowe” (promise promise).  This is where we shake hands while I say that I promise that he will not receive injections, belowe belowe.  That makes it a more sincere promise according to Boeta.

On the way to hospital I received a message from Lizbé, my cousin.  Boeta and Carien call her Zippie and I just love that name.  It “feels” right for her – bubbly, smiling and always there.  She offered to sit with Boeta so that I could get out.  I was already typing the “thanks for offering but I’m OK” reply when I realised that I’m not OK and that this would be exactly what I need.  So I graciously accepted.  Aren’t you proud of me?  I am.

Woutertjie was so excited when she showed up.  He loves her and she brought lots of things for them to do.  In the end he didn’t last an hour before he fell asleep – such are the perils of low Hb!

I went off and had coffee with Wouter.  I also saw his new office for the first time since they moved there a month ago… 

Soon after I got back Annie arrived.  Every time that we are in hospital Annie arrives with a bottle of water for me.  Sometimes flavoured, sometimes not but always with love and a hug.  The blood transfusion started at 15:00 (200ml over 4 hours) and when she got there it barely started.  Boeta didn’t want to look at her or speak to her or take the cooldrink she brought. 

10 minutes later, as soon as he hit the 30ml mark, he turned into another child.  He was talking and gesturing at the DVD he was now suddenly interested in.  By 50ml he asked for something to eat.  Imagine my surprise!

I can’t believe how much difference such a little bit of blood makes.  30ml is 6 teaspoons full of blood.

Before the transfusion his Hb was 7.0 and afterwards 10.4 – no wonder Boeta was bouncing off the walls.

His white cells are 1.2 today (neutrophils 0.19) and his platelets 336.  This is a huge increase from two days ago (0.4 and 102).  Gerrit feels that it won’t be high enough for surgery by Friday.  Apparently next week’s chemo will be postponed for a week to allow for the surgery to be done – surgery and chemo in the same week doesn’t mix because it is too much trauma for Boeta’s body to handle.

I asked Gerrit and sister Stoltenkamp why Boeta was still nauseous.  Sister Stoltenkamp smiled and said I should be grateful – it means the chemo is still in his system and fighting the good fight.  Gerrit gave me The Look (The Look means that he would like to say something but that he rather wouldn’t in the interest of professionality and that I should zip the lip immediately – I am intimidated by The Look! :-D) and added that Boeta received extremely potent chemo, in other words, no blooming wonder that he is still nauseous! 

The transfusion only ended at 19:00 and Boeta was running a fever of 38 degrees so he is staying at hospital for the night.  Gerrit seems to think that we would prefer to take Boeta home – I am so grateful that he can stay and be monitored continuously!  I think we confuse the nurses by not being overly eager to leave the hospital.

Until anyone tells me anything different here is what our next couple of days hold:  No surgery this week to allow him to get some strength back.  Surgery during next week.  Chemo and radiation from the week after that.

Tonight I want to nominate Zippie and Annie for my self-invented Angel Awards.  You really were the angels I needed today. 

Lizbé is an ICU nurse and sees lots of families who have to live the hospital life for weeks on end.  She told me today that it is absolutely normal to get tired from living in this twilight zone but that most people only have to do it for a couple of weeks, not more than a year like we have to.  So I can stop feeling like a loser for being as tired as I am.  It’s been bothering me a lot, this excessive tiredness.  But Zippie says it is because my reserves are depleted and I don’t get enough opportunity to replenish them before we head back to hospital.  Thanks Zippie.  I needed to hear that.

Annie is always there or willing to get there at a moment’s notice.  You are the friend everyone should have.

I don’t know what made Lizbé and Annie show up when they did today but in both cases the timing was perfect.  Typical angel behaviour.  Thank you for listening when you got Word to visit.

And strange as it seems, this sudden change in plans today erased all my feelings of being in limbo.  Being intellectually challenged would be nice, but that is not why I took the year off.  I am doing something I’m good at.  I belowe belowe Boeta that he will not get an injection (and in doing so keep him calm), I cuddle Carien whenever she wants to be cuddled (and when she doesn’t want to), I really try to be a good wife to Wouter (and Baby, if you try to contradict me you will be in deep trouble).  And I am a fabulous honorary nurse at hospital. 

My mom says that this journey is like running the Comrades.  We will never make it without accepting water from the supporters on the side of the road.  Now we just have to learn to ask…

We are … 60%?

Turns out I caught Carien’s tummy bug.  No wonder I feel out of sorts.  I don’t get sick a lot and I don’t know how to deal with my body not being 100%. 

In our house the stereotype is reversed.  When Wouter gets sick he becomes the bravest, strongest, understated-est patient ever.  I become sorry for myself.  Go figure!

Wouter nearly had heart failure.  As a joke I told him I think I am pregnant because I felt better after I had dry toast.  We are planning on expanding our family but not now!  His face was so worth it. 

Tomorrow morning Woutertjie is going for a full blood count, followed by a blood transfusion if necessary.  It could turn out to be a long day.  Here is our estimated iteni itine itinn plan for the day.  I pride myself on my vocabulary and spelling skills but that other word that shall not be mentioned I simply can’t get my head around.

7:30  Arrive at hospital and get Woutertjie admitted

8:00 Arrive in the ward

8:30 Blood is sent away

9:30 Results are back

10:00 Blood is ordered from the depot

12:00 Blood arrives

12:30  Transfusion starts

16:30 Transfusion ends

18:30 Post transfusion observations complete

19:00 Paperwork done and we can go home

Based on arriving home at 19:30 that would mean that Wouter will be home before we are. 

I was forced into adding the previous sentence by Hugo, Wouter’s co-worker who read the blog every day.  After yesterday’s “discussion” about Wouter’s work hours Hugo sent me thinly veiled threats if I didn’t mention that Wouter got home at 17:30 today.  I can’t begin to describe how much I appreciated it when the door opened and my bestest, sweetest, funniest, supportive-est husband walked through it. 

Tomorrow I am making an appointment with the oncology social worker to start working my way through my issues.  Wish her luck.

OK, we are not so good.

I am not doing well at the moment. I am way more tired than I should be based on what I do and how many hours sleep I get. But then I don’t sleep well because Carien keeps me awake most of the night (she sleeps with us from when she first wakes up at night, about midnight-ish). She is still breastfeeding and helps herself throughout the night. Whenever I tell someone about this I get the “well, just wean her” comments or looks. And this is exactly the problem. She didn’t sleep as badly and drink as often before this rollercoaster started.  She does it because she feels insecure.  So who am I to withhold her security from her?  In other words, please don’t comment along the lines of weaning, sleep training, etc.  I’m not the kind of mom that can stand back and let my children cry because it would be more convenient for me to change their lives.  That’s just who I am.

But I am struggling.  And it doesn’t help that Wouter is swamped at work.  He leaves home before we wake up and returns at 20:00.  And for someone who isn’t used to spending the whole day everyday in the exclusive company of children (that would be me, by the way) it is tough.  By 17:00 I am itchy.  By 18:00 I am on the verge of exploding.  And since I know that it isn’t my children’s fault, the self-control I need to not take my frustration out on them is very draining.  I can understand why Wouter isn’t very impressed when he walks through the door and I dump them both on him.  I realise that he’s had a hectic day as well.  But this is where the little devil on my shoulder whispers: yes, but he is doing something he loves; he is in the company of adults; he gets some mental stimulation.  I really miss adult conversation.  I miss doing something mentally challenging.  I miss being good at something.  Because I feel like a crappy house wife and mom.

Let me quickly interrupt myself here:  I don’t have a problem with Wouter working long hours.  I know that we as family are first on his list of priorities and I know that if he needed to, he would drop everything and get his butt home.  I know that he can work late without worries because he knows I will take good care of the children while he does.  And I think he knows that I feel this way.  Both of us on edge doesn’t lead to deep, meaningful conversations though.  We are so grateful when we manage to get to the everyday conversations (will you buy electricity? / remember that we are in hospital 5 days next week and 5 days the following week! / the hospital phoned with Boeta’s counts / Carien is sick and we need to keep them apart) that we neglect the rest.  And we both know that we shouldn’t, we are just to plain exhausted to do it.

Anyway.  Enough of this.

Boeta went for a full blood count today because he is very pale and tired.  His Hb is now at an all time low of 6.5 while his platelets improved slightly to 102.  His white cells showed a 400% increase!  It is now 0.4 … !  So we are still in isolation and I will continue being frustrated as hell.  I am not cut out for the stay-at-home-mom thing.

Carien amazes me everyday with her talking.  Boeta talked a lot at 18 months but we couldn’t understand a word.  He said some words clearly and babbled whole conversations to himself.  Carien on the other hand never babbles.  She constructed her first 2 word sentence last week:  Mamma toe (to mommy).  But she has a 1 word vocabulary that is amazing.  And she says every word perfectly.  Well, mostly perfectly.  My favourite incorrect word is her favourite food, mielies (corn on the cob) that she calls mimi.   She is shockingly understandable.  I know exactly what she wants because her few words, hand gestures and body language speak volumes.  She, like the mimi, is edible! 

Very early on Wednesday morning I have to take Boeta for another full blood count.  Following that he will most likely receive a blood transfusion during the day.  It seems unlikely that the surgery will happen this week because of his low counts – you can’t really cut someone open that has no immunity to make sure said cut doesn’t get infected.  And according to the lady from the radiation department they will irradiated based on the surgery results so maybe the radiation will also be put off.

I wouldn’t mind if next week is simply chemo.  I don’t have the energy for complicated things.

We’re good

Carien is well again, Boeta had a bit of a runny tummy but no fever and he is eating and drinking.

So we are doing well. 

I am extremely tired the last few days – Carien not sleeping well had a huge part in that.  So lets hope I can start sleeping again from tonight!  I know that I am snappy with Wouter.  I don’t mean to be but by being to tired to formulate long sentences which include words like “please” and “thank you” and “excuse me” I manage to come across as … well … cross!

Sorry Baby!