I can hear my child screaming and I can’t do anything to help

They are busy putting in a naso-gastric tube.  Boeta hasn’t been gaining any weight and he needs to get supplemental feeds through the nose tube.  Gerrit prescribed chlorohydrate but Woutertjie vomited it all up.  Now he is doped up with Dormicum.  At least he won’t remember the trauma but I can hear him screaming in his room.

And it is just killing me.

Rebellion

After Friday I had to get out of hospital and stay out of hospital for a while.  Do you realise that in the last 5 weeks Woutertjie was out of hospital for only 5 days?  Yes, some nights in this time we slept at home, but he (and I) has seen this place just about daily for 5 weeks. 

It is insane.

I am insane.  But that is another story.

After walking out of Panorama on Friday I went to my parents’ (Wouter stayed with Boeta) and got into bed and stayed there until morning.  Carien had a good night (thank you Debbie!) and I thought I felt better when I woke up.  I was awake a whole 20 seconds before I burst into tears again.  My mom then chased me out of the house – she arranged with my sister in Grabouw (about an hour’s drive) and before I could fall apart again Carien and I hit the road.  We spent the day with Lielie, Benno and Ada and returned home to find that Boeta was given “parole” – a temporary discharge.  He was so tired.  He spent most of the time sitting on our laps and they returned to hospital by evening.

On Sunday I didn’t put my feet in the hospital either.  Boeta received another parole and we spent the day at home, not doing much of anything.  Boeta watched DVDs from the couch.  He was still so tired.  We visited Wouter’s brother and his family but Boeta mostly just lay wherever he could find a spot.  He was starting to dehydrate again and they went back to hospital.

I really didn’t want to go back on Monday.  Partly because of the doctors and nurses that supported me on Friday.  Some days I need to not get pampered so that I can get the facade back up.  I managed to burst into tears only once on Monday.  Seeing as how I stopped counting at my 4th panic attack on Saturday I think I did well.

Either way.  I am doing better and Boeta is doing OK.  He is still very weak and has been on TPN (IV feeds) since Friday.  He had to get a peripheral line in his hand because TPN can’t be run through the same line with anything else and Boeta still needs a lot of fluid.  He wasn’t impressed at having to get an “insteker” again.  Not at all.

I need to get out of here

I am cracking up.  I’ve tried to put it off but that isn’t working anymore. 

I need to get out of hospital but I really need to get out of this ward.  Since Ward A (paediatrics) is under construction we’ve been accomodated in Ward C (oncology).  I hate, hate, hate this ward.  The people are great, the rest not.

It is too quiet.  This ward is for adults with cancer.  And if you are an adult with cancer you generally get your chemo as an outpatient in a chair in the chemo room and only end up in the ward when you are really sick.  In other words, when you are terminal and busy dying.  People here don’t laugh at each other’s jokes.  They are too sick for that.  They are in pain.  They are emotional.  Their families are emotional.  It isn’t a pleasant ward but it isn’t the patients’ fault.  They don’t want to be here either.

The visitors are another ball game.  I am so fed up with people walking by and looking surprised when they hear a child laughing.  And then they stop and stare at this bald child before they walk away, shaking their heads, whispering about how shocked they are at children with cancer.  We aren’t monkeys in cages.  And my child isn’t dying just yet.  So take your pitying looks and whispered comments and shove it wherever you want to, as long as it isn’t in my face. 

Our doctors don’t want us to move back to Ward A because there are too many children with too many germs.  The risk of the onco-kids contracting something is higher than in Ward C.  But the risk of this oncomom chewing through her wrists if we stay her isn’t just high – it is a certainty.

In the paediatrics ward Boeta will be just as sick as he is here, but there are noises and movement and it feels like home.  There are pretty rooms, the staff are like mothers and I am allowed to complain about Boeta being moody without constantly feeling like I should be grateful that he is alive for one more day.  Ward C feels like a hotel.  A very nice hotel, but still only a hotel.

And through all of this the staff of the oncology ward is wonderful.  They are friendly, they are helpful and they understand the ups and downs of cancer and chemo. 

It feels like we are visiting distant family – we are friendly with each other and they gladly share their space with us but there comes a time for us to go home.  To Ward A.  And our family.

OK, I know why I was quiet for so long

Before I wrote yesterday’s update I thought I felt fine.  Tired, but fine.  After writing it I felt drained, emotional and utterly rebellious.

Soon after Boeta was diagnosed I met Lauren Beets online.  A while ago I did a post entitled “You know you are a cancer parent when” after I received the list from her. 

Lauren’s son Christopher was diagnosed with rhabdomyosarcoma of the upper eyelid muscle about June of last year.  In other words, he has the same cancer as Boeta but his eye is affected.  Christopher got better, got worse, got better and now suddenly the cancer has exploded into his brain.  He has been given 2 weeks to live. 

The past week, as tests were done to determine what was going on, this family has been on my mind all the time.  By not writing I tried to not think about it.  And I managed to sort of keep an emotional distance.  Not anymore. 

Please keep Lee, Lauren and Trisha (Christopher’s sister) in your thoughts and prayers.

What a half-a-week!

My last post was on Friday.  It is Wednesday.  I think this is the longest I’ve ever gone without updating.  Don’t ask me why I waited so long.  I asked the same question and I am still waiting for an answer.  I am that uncommunicative.

Woutertjie was discharged from hospital on Friday.

Saturday morning I went to a Brandpower breakfast (Brandpower – helping you buy better).  I am one of their home testers and since the breakfast meant that I would get out of the house and see grown-ups I was there in a flash!  Aside from the outing and a breakfast that I didn’t have to prepare, the best about it was seeing Sandi again.  Sandi is officially the most opinionated person that I know and she did herself proud by winning a prize for the most honest review.  I wasn’t surprised!

On Sunday Wouter and I started off by agreeing that Boeta will end up in hospital before sunset.  *said in a heavy Mafia accent* We know these things.  By late afternoon it was time to make the trip.  Wouter packed an overnight bag because he said Wotuertjie was going to have to stay over.  I put my money on a quick rehydration and sleeping at home. 

Wouter won.

I still think it was just Gerrit’s way of getting to me.  Obviously.

Monday the chemo started again (4 hours per day, Monday to Friday).  Do you realise that it is week 41 already?  The 56 week mark isn’t that far off anymore.  From the end of last week Boeta’s tummy started acting up more again.  Right now it is back at the pouring stage.  He is constantly on IV fluid because he dehydrates withing a couple of hours.  A big worry with diarrhoea is electrolyte imbalances, specifically potassium.  The minimum normal reading for potassium is 3.5 – Boeta’s dropped to 2.1 today.  It was done this morning and was 2.7 so the lab asked for another sample to make sure that it was in fact that low.  By the next sample (a couple of hours later) it was 0.6 units lower.  Scary stuff.  There is now potassium added to his IV fluid to stabilise his readings.

What else?  I don’t like updates like these.  It is just a log of everything that happened.  But since the blog is my only way of keeping track of what happened and when, it has to be done.

Oh oh oh!  Annie and Stephanie had their babies Monday and Tuesday respectively.  I’ll add photos as soon as I get it!

A different way of looking at things

Last night we had a very much unplanned supper.  So unplanned in fact, that we didn’t even know who we were going to.  I am notoriously bad with names.  I am fairly good with faces, but names … not so much.  Putting a name to a face is one of the few challenges that life throws my way.  Being perfect in every other way I am not sure why I was saddled with this deficiency.

During the amazingly enjoyable visit I complemented Hanlie (a member of our congregation – I know her face ) on the toy she got for the children – a magnetic fishing rod and fish.  Boeta has been fishing mad the last week or two.  To my amazement she answered that the Holy Spirit knows what it does – when she decided to buy the fishing set it wasn’t her decision.

It made me think – how often do you listen to that inner voice urging you to do something?

These past months we have been on the receiving end of many such urges.  One day I learned that I had to repay some money to UCT (my employer).  R4200 because they overpaid sick leave and another R760 for some insurance or other because I am still on their books.  The next day a friend called.  She and her husband decided to transfer R5000 to my account.  They didn’t know that I had to repay money and yet they transfered almost exactly the correct amount.

More recently we learned that we had to pay a couple of thousand excess on some medical bills.  I mentioned it to a friend who mentioned it to friends and the next moment we had the exact amount paid into my account.  I don’t think for a moment that we received the exact amount we needed by accident.  So why do I believe that the Holy Spirit “arranged” for this but never consider that other decisions may also be influenced in this way?

This morning I wanted to be at hospital by 10:00.  Yet for some reason I took an extra long shower, took a lot of time dressing the kids and only left my parent’s home (after dropping Carien off) at 10:00.  Two street blocks from the hospital there was a horrible accident.  We came upon it about 10 minutes after it happened – there was already an ambulance parked on the kerb and the one paramedic was jumping out of it with a primed drip bag and tubing* on the way to the other one who was standing next to the wreck.

As I was thinking about this the whole morning I couldn’t help but ask myself if there was a reason for me being late this morning?  I usually hate being late yet it didn’t bother me today.  As I drove past the scene at 10:10 I asked myself if this too was because of the miraculous workings of the Holy Spirit.  I’m not saying that the cars involved in the accident weren’t guided, but if Woutertjie was in accident it would’ve been nasty.  Very nasty.

I’ve spent most of today pondering this.  Now it is your turn.

*Trust me – I know what it looks like by now.

Long time no chat

I’ve been bad at updating again.  But not because I feel particularly bad at the moment.  Just because.

Woutertjie started with chemo yesterday.  A repeat of the 5 days a week for 2 weeks regime.  The only difference is that we were allowed to go home every night last time and this time Boeta will be in hospital all the time.  I did manage to convince Gerrit that we could sleep at home last night.  I am such a rebel.

Boeta and I spent most of our time in the cafeteria today.  Soon after arriving in hospital he mimed (miming is the new flavour of the hour) that he was thirsty.  For blue cooldrink (Powerade).  And he had to come with to buy it.  Since he was on his chemo drip already I told him that, if he wanted to go, he had to walk.  No wheelchair or being carried (his Hb is 8.4 so he is quite tired again).  He agreed so off we went to the cafeteria.  After buying I started back to the ward but The Boss insisted that we sit at the tables instead.  We sat there, chatting and counting (also a current flavour) for almost an hour and a half. 

By afternoon, when Wouter arrived, we went to “die tafels plek” (the tables place) again to have a “cuff aff tea”.  Boeta had NikNaks with him and as soon as the waiter arrived he started miming how hungry he was for the chips.  But he didn’t want us to open it for him.  We finally persuaded Boeta to say what he wanted and he told the waiter “You must bring a knaaip* (pronounced k-nigh-p) and then you knaaip this broken”.  In other words, “could you bring a pair of sciccors and cut this open, please”.  The waiter, Wouter and I were just about crawling on the floor with laughter.  The good thing about being in hospital as much as we are is that all the staff knows Boeta and actually understand his attempts at a second language.

Carien has also picked up a couple of English words and terms.  This evening when I got home she walked over to me holding her pajama bottoms and said “we done it!”.  In other words, “I looked for it and I found it”.  Someone has been watching too much Mickey Mouse Clubhouse, where every other sentence is punctuated with Mickey squeeking “We did it”.  Her favourite word is still “bee-oooootiful”.  Mostly used to explain why she is walking around the house with my jewellery or something else that she shouldn’t have but really wants to hold because it is, in fact, beautiful.

Just like she is.

 

*knaaip – what knip (cut) becomes when you Anglicise it Boeta-style.

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.