Found: Appetite

This morning at 06:00 Boeta woke Wouter up asking for food.  Wouter gave him some milk and they went back to bed.  At 07:30 he woke me up too.

woutertjie:  (sounding very sorry for himself and therefore speaking English – or his version thereof – and melodramatically rubbing his tummy)  Mamma, I am vewwy hungwy.

S:  (answering in English because Boeta likes being answered in English)  OK, let’s go find you something to eat.

w:  I am hungwy for aggs (eggs)

S:  Then let’s bake some eggs.  Do you want toast too?

w:  (rubbing the tummy again)  I loooove toast vewy much.

In the end Woutertjie’s breakfast consisted of 2 eggs, scrambled.  One slice of toast, buttered.  Lots and lots of cheese, grated.  And let’s not forget about his cuff aff tea.

We are o l d

Exactly a year ago we were walking around at the Varingfees (Fern Festival), our congregation’s very OTT yearly church fundraising event.  It is a weekend of music, art and absolutely no alcohol.  Wouter and I, with 3-year old Boeta and 1-year old Carien walked to the event as it is less than 1km from our house.  The children had so much fun and we had a marvelous time.

Two years ago, 2007, we were attending the first day of the festival too, with Carien aged 3 months bundled up in a sling and Woutertjie staring at everything.

When Wouter and I are deciding on plans we tend to look at each other, mind-read a bit and then make up our minds.  This afternoon as we heard the music starting at the venue we pointedly didn’t look at each other.  Neither of us really felt like leaving our house.  Shock!  Horror!  We are old!

In our defense, Woutertjie was discharged from hospital at lunchtime today.  Cristina and Gerrit both felt that he needed to get out for a bit after his week in hospital.  Especially since we are starting with chemo on Monday again.  And since he dehydrated to quickly last time he will most probably stay in hospital and on fluid for the 2 weeks that the chemo will go on for.  I am including next Saturday and Sunday in my planning as he will probably need to stay in then.

Our house looks like a hurricane came through.  Not that it usually looks that much better, but tonight it I really hope no-one sleepwalks.  I foresee broken bones…  It was a chaotic, hectic, noisy, fabulous afternoon.  Boeta and Carien had so much fun being normal kids.  I’ve forgotten how much energy they have when they are together!

Oh!  Oh!  Oh!  I almost forgot to tell you.  Boeta  l o v e s  shopping.  He particularly loves CapeGate Mall because the underground parking reminds him of the quicktunnels of the Gummi Bears.  I needed to get a couple of things urgently (like nappies for Carien – last night I had to use the last emergency nappy that was hidden in my car) and Boeta and I went to CapeGate as soon as he was discharged.  What would’ve taken me less than an hour to do took 4 hours.  2 hours were spent in ToysRUs where Boeta was deliriously happy.  He looked at, touched and tested everything he could reach and had me hand him the things he couldn’t reach.  And then we walked into the next isle and there were Buzz Lightyear and Woody.  I don’t think Woutertjie breathed for the next 3 minutes.  He was stammering, pointing, staring but not making a lot of sense.  And then he said, reverently:  “Buzz!  Woody!  Julle het verlang na my!”  (Buzz!  Woody!  You missed me!)

He was so excited, he didn’t touch the box that they were in.  He asked me if he could give them a hug, which he did.  Then he pressed every button he could reach and stopped random strangers to show Buzz and Woody to them.  Guess what Santa will have to deliver in a couple of weeks’ time…

Biiiiig update

Dear All

We are doing well.

Love

The Grové family

 

OK, the update is done.  Now I can get to details.

We are doing well.  I managed to pull myself together (eventually) and life is going on.  Woutertjie is still in hospital (Saturday, Sunday, Monday, Tuesday, Wednesday, Thursday) but there is a faint possibility that we may be discharged tomorrow.  That would give us the weekend at home before chemo starts again on Monday.  Woutertjie still has horrible diarrhoea but he is urinating again.  At one stage he was on 150ml/hour of IV fluid 24 hours a day and then only urinated 40ml for the day.  When he started urinating again (ie when he began to “hold on” to fluid better) they started turning his fluid down and he is now at 80ml/hour.  Maybe, just maybe, he can be weaned off completely by tomorrow.  I can hope.

 

My brother and his wife’s baby was born tonight.  Welcome to the world Neil!  He is beautiful and weighed 3.8kg.  Mom and baby are doing well.

 

Lastly I need all of you to pray for Enrico, the 4-year-old who is receiving treatment with Boeta.  He has neuroblastoma and has been receiving chemo for more than a year already.  A while ago his bone marrow seemed clear and he had an operation to remove the residual tumour tissue from his abdomen.  A week ago his scans were clear of cancer in the abdomen but showed traces in his bone marrow.  They did a bone marrow biopsy and while they were waiting for the results he went for a CT scan.  In the week since his previous scan a tumour measuring 9×8x6cm (or there abouts) appeared in his abdomen.  Please pray for Enrico, his parents and the doctors who have to decide on treatment.  This is not good news.

Dehydration Day 2

Before you ask, I am doing better today.  A lot of TLC from my parents did wonders.  Carien and I stay with them when W & w sleep in hospital.

I have made peace with the idea of spending the week in hospital.  Not that I have much of a choice. 

Woutertjie is doing a lot better today.  He even ate a bit.  And he asked for a cuff aff tea (cup of tea – you have to love his attempts at phonetic English).  He only started urinating after receiving 1.2 litres of fluid.  In other words, his 14.3kg body needed 1.2 litres of water before it could start excreting water.  Today he is still not urinating enough so his fluid infusion rate was increased.

Back in hospital

After a wonderful stork party for Stephanie, Gerrit’s receptionist, I got home this afternoon to Wouter playing keyboard, Carien messing around and Woutertjie asleep on the couch.  I called Wouter over and showed him what “sunken eyes” looked like since I only found out during the week what to look for.  Woutertjie was definitely a bit dehydrated but not enough to make me overly worried.  He has been more and less hydrated the whole week and he didn’t look worse than he did yesterday.

I put Carien down for her nap and fell asleep with her.  When we woke up 2 hours later things had changed dramatically.  Wouter’s brother and his family & the four of us were all going to watch the Currie Cup final (rugby) at a Spur (restaurant).  Wouter and Carien went ahead.  When Boeta and I left the house I already knew that we weren’t going to watch rugby…  Japie, Wouter’s brother, is a doctor and as soon as he laid eyes on Boeta I could see that he was worried.  So was I.  Boeta’s eyes were extremely sunken with dark circles around it.  I phoned Cristina who told me to take him in immediately for fluid.  Boeta, Carien and I drove to the hospital and left Wouter to finish watching the rugby.  I can’t see why all of us had to suffer when it wasn’t necessary.  Woutertjie was put on IV fluids immediately and my mom fetched Carien from the hospital.  Wouter joined us later.

Those are the facts. 

Many times in the past 10 months I felt like giving up and lying down and staying down.  Today the only thing that kept me going was …  I don’t know why I kept going.  I don’t know how I kept going.  And honestly, I didn’t really keep going.  I just survived the day.

The only ray of sunshine during the past 2 weeks of daily hospital visits was the thought of spending the weekend at home.  And aside from Monday, the whole of next week too.  Since Woutertjie’s white cell count is normal we were going to do all sorts of nice things.  We were going to visit, we were going to sight-see, we were going to act like we were normal. 

But we aren’t normal. 

You would think that I’ve learned that by now. 

I am so tired of all of this.  I am tired of seeing my child sick.  I am tired of having to act all strong and in control while I want to fall to the floor and never get up again.  I am tired of life passing us by while we are stuck in hospital.

I am just so tired.  I don’t want to do this anymore.  I don’t want to cry outside Boeta’s room to keep him from seeing me.  I don’t want to be pitied by strangers.  I don’t want people staring at my child.  I want to have a normal life.

And I can’t have it.

Because the rest of the weekend Woutertjie will receive fluid to rehydrate him.  And next week he will start with TPN (IV feeding) because he is emaciated.  Then as soon as he is sort of better the chemo will start again.  Another 2 weeks of daily chemo that will have him puking his guts out and loosing the rest of it down the toilet.  His diarrhoea is so bad that it looks like fibre rich orange juice.  When he goes to the loo it sounds like he is urinating even though he isn’t. 

This isn’t what I wanted for my children.  Being sick all the time or being neglected because your sibling is sick isn’t how children are supposed to grow up.

This just isn’t right.

Wheels of fortune

Summer has arrived in Cape Town with a vengence.  One day last week it was 25 degrees Celsius by 08:30.  It peaked at 33C.  Getting into a car that spent the whole day in that kind of heat isn’t pleasant. 

The security staff at Panorama (Alexa Security) have adopted Woutertjie as their own.  He has them wrapped around his finger and they love every moment of it.  By now they also know that he gets very tired from the chemo and since it is quite a walk from the car to the ward I usually have to carry him.  Panorama MediClinic is very short on parking spaces and getting an undercover spot after 08:00 is extremely unlikely.  This morning, as we turned into the hospital grounds, they indicated that I should drive to the covered area.  And this is the sight that met us. 

A parking spot and a wheelchair for “ons Woutertjie” (our Woutertjie).

You know you are an oncomom when

1.  You are sitting in the hospital cafeteria with your child.  He starts vomiting.  You simply hold the container for him, make soothing sounds and continue to eat with your other hand.  And it takes a while to realise that there are other people in the vicinity who have now stopped eating…

2.  Your child asks you to draw with him.  He wants you to draw him, as a matter of fact.  You doodle while you are talking to someone else.  When you are done with your subconscious masterpiece the stick drawing looks like this. 

Please note the correct placement of the Broviac and the wheels under the drip stand.  And the lack of hair.

3.  You only realise that the above isn’t normal when someone tells you that it isn’t…

Wise beyond his years

Cancer is a strange thing.  In some ways it makes everything stand still and in some ways it speeds everything up.

So many aspects of our lives have been brought to a complete halt.  Our social life only includes those people who realise that “yes, we will be there” actually means “yes, we will be there – provided there isn’t any trace of fever/vomiting/diarrhoea/lethargy/dehydration/anaemia/neutropenia/pananoia in the run-up to the event and even though we may tell you we will be there in 5 minutes, we may actually be in hospital in 4.

Wouter and I can only go anywhere on our own when we manage to arrange someone who has an intimate knowledge of the do’s and don’ts for looking after the children.  Do be overly vigilant.  Don’t let a bucket out of your sight.  Fortunately my parents are usually available.  We don’t trust many people with the responsibility.

You know what?  I just realised that this post is turning into a woe-is-me one again.  And I don’t feel all woe-y tonight so I am going to stop my lamentation right here and skip onto happier news. 

After our fabulous weekend away we reported for chemo today.  Sharon drew the blood (through the Broviac) and Boeta and I took it to the lab ourselves.  Two reasons – firstly the results are out a lot quicker that way and secondly Woutertjie was itching to get out of the room.  All the way there he showed the bag with the tubes to everyone we passed and told them that it was his “bloed tellings” (blood counts).  I didn’t know that he knew the terminology.  I asked if he wanted to take the blood to the lab and he started talking about his blood counts.  Amazing.  Even more amazing is how he muscles through the “l” sounds.  It is a new thing.  He used to just ignore Ls or replace it with Js.  Now he insists on pronouncing them.  It is very sweet and a potent reminder of how young he still is.

The lab staff are so amazing.  They welcomed him into their domain with open arms and showed him how they did the tests.  He looooved it.  It is the second time we went there but he was a lot less uptight this time.  Thank you to every single person at PathCare Panorama.  You are very special.

His full blood count was perfect but his U&E came back not so bright.  U&E tests for kidney functions/electrolytes/dehydration/that sort of stuff.  He was definitely dehydrated and his levels hinted at imminent kidney failure, according to Cristina.  So after his 15 minutes of Vincristine and 4 hours of irinotecan (Campto) he got another 200ml of fluid (half Darrows).  He is feeling a lot better tonight and “flew like Buzz Lightyear” – that means that he shouts “to infinity and beyond” and then launches himself onto the couch.  Carien was hysterical with laughter.  She misses Boeta more than you can imagine.  She just isn’t cut out to be an only child.

It was a good day.

From the mouths of babes

We spent the most relaxing weekend ever in Pringle Bay this weekend with Wouter’s parents. 

On the way there we drove past a bushy area with lots of trees.  Whereupon Woutertjie said in a Doctor-Livingstone-in-the-jungle voice:  “Mmmm.  Deepest, darkest Africa…” 

1.  Someone has watched Madagascar too many times.

2.  It takes a lot of self restraint to not scream with laughter after that insight.

The end of week 37

We are done with week 37 of treatment.  From Monday we have 18 weeks left.

Where has the time gone?  I realised this week that Carien was 1y3m when Woutertjie was diagnosed.  She thinks all brothers have tubes hanging from their chests, have no hair and spend more time in hospital than at home.  Being too young to understand is a blessing.

Wouterman has been such a star this week.  With his Hb in the normal ranges (11.1) he turned into our son again.  Calm, understanding, patient.  Everything that he isn’t when his Hb drops.  Today Cristina came by to check on him during his chemo.  The conversation went like this:

S:  His Hb is dropping – his moods are rollercoaster-ing again.

C:  (strictly)  He is allowed.  He is receiving chemo.

Don’t mess with Cristina’s children.  :-)

Carien has become such a little lady.  She undresses herself all the time, telling me that her clothes are wet (never dirty – not her clothes) and then she insists on putting on a different outfit.  She hoards pretty things like a magpie.  Jewellery and ribbons are her favourites.  She walks around with a pink, sparkly handbag stuffed with her treasures.  Usually that includes a panty as well.  I’ve stopped wondering about that one.

The past weekend she decided that she wanted to see what was going on on top of the braai (barbeque) grid.  She intended pulling herself up but fortunately got burned before she made good contact so she let go.  Blessings in disguise.  The spot turned chalk white immediately.  A sure indication of a deep burn.  We rushed her off to the kitchen and while I was running cold water over the burn she cried and cried and then looked up and declared “Ekke klaa gehuil” (I am done crying).  So off she went.  I had to catch her first before I could dress the burn.  It is now a week later and she still wears a substantial bandage.  The blister is the size of a man-with-large-hands’ thumbnail.  It reaches from the base of her little finger about halfway down her hand.  It is a big one.  At the moment I am just trying to keep it closed for as long as possible.  She is so rough I don’t think it will last much longer.

Aren’t children amazing?  The last time I burnt my hand it was a tiny spot and I felt sorry for myself for days.  Adults are wimps.  Well, this adult is.