The Broviac is out

Today Boeta’s Broviac is one day short of a year and 5 months old.  Shocking and awesome and such a blessing.  Ever since that horrible day when it was put in life became easier for Boeta.  No more needles.

I’m doing this one in pictures again.  Here goes.

The bath the night before.  Carien displays her broken, fixed and broken again teeth.  She is a rough one.

Boeta grins his photo grin.  Every bath for the last 6 months (yes, he didn’t bath for almost a year after the Broviac was put in – I had to wipe him off with a washcloth) he had to take care to keep the dressings dry.  This was the last time.

Boeta insisted on a “silly faces” photo.  He looks pretty much the same to me!  Carien on the other hand….

Wouter doing his “I am a male model” impression.  Mufasa!  😀

Observe the subject in its natural habitat.  Earphones on, remote in hand, watching infomercials.  Boeta developed an infomercial habit in hospital and is constantly telling me about getting the Twister Pro at the Verimark store – NOW, Budget Insurance and his alltime favourite, the Aer-O-Space inflatable mattrass.  Strange child, this one.

Observe the subject’s new hair.  I feel so bad – initially his new hair was white and now it is becoming darker.  I noticed a dark spot on his head a week ago and decided that it was either cradle cap (He is 5 years old!  Shameful!) or dirt from playing in the sand.  So I grabbed a washcloth and started scrubbing.  Imagine my surprise when the dirt wouldn’t come off and instead stood up in the air.  Bad mommy! 😀

The Broviac in all its unbound glory.  From his chest it goes up to his neck, into his jugular and then down towards, but not into, his heart.  At the exit point the line was looped in flat coils 2 – 3 times and taped down and covered with Opsite Post-Op.  The remaining end was then folded upwards and taped down with Tegaderm.

Closer.  Note how the area that was covered up for 17 months is lighter than the surrounding areas.  And he was never without a shirt in that time.

A perfect insertion site.  No inflammation.  Look at how dirty the clamp is.  It has been collecting fluff for a long time and the holes are too small to fish it out.

Ready for theatre.  He loves his new pajamas and to get him out of it I had to tell him that it might get wet when they remove the Broviac.

Tannie Sharon seeing us off.

If I had more bandwidth I would’ve uploaded a clip of Boeta after waking up.  He was such a sight.

Before the operation Boeta and the surgeon, Dr Daniel Sidler, spent about 10 minutes talking.  My favourite line was when Boeta told Daniel “My baby is a mistake.  She kick me off the bed and I fall on the ground and I hit my head on the … (insert sound of heavy thinking) … kass!  (kass pronounced like an American “pass” – he meant bedside table)*

Daniel has decided to take Boeta along on his next vacation.  He recons he will have the most relaxing time ever with Boeta’s 5 year old bilinguality.

Boeta talked all the way to the theatre and as he was wheeled in he turned onto his tummy on the bed (to have a better look) and exclaimed “Wooooowwwww!”  He was impressed.  I am amazed at how willing he was.  The last times that he had to go to theather – come to think of it, that was when the Broviac was put in – he was edgy and untrusting.  Today I lifted him onto the small theater bed and he lay back and told me to hold his hand and to cover his eyes with my other hand.  I’m not sure why I had to cover his eyes but I did and he was happy.  The anaethetist was significantly confused when he approached with the oxygen monitor and Boeta immediately held out his finger without being told.  Oncokids are a different breed altogether.  Boeta went under so easily this time.  I am very happy about it.

Not long afterwards Daniel came to tell us (Wouter came with) that all went well and spent some time chatting.  I find it quite amazing that he remembers everything about the day he inserted the Broviac.  He told us a bit about the background panic before the time.  The doctors really didn’t think he would survive the surgery.

Boeta managed to confuse the recovery room sister even more than he did the anaethetist.  Usually when children come to they cry.  Not this one.  He literally came to talking.  He was asking for me and scolding them for making him wiggle (wikkel) and generally not shutting up for even a moment.  He is so funny on Dormicum.  He looks and acts like a heart sore drunk.  He rants and raves and the next moment he cries pitifully before he goes aggro beast on an unsuspecting passerby who looked in his direction.  I know I shouldn’t laugh but I did.  And I have it all on video.

Less than an hour after he came out of surgery he was up and running around ward C, the oncology ward.

At home he and Carien built a mountain using couch cushions and started diving onto it from the naked couch.  This with a hole in his jugular (it self-seals so he didn’t get stitches) and a hole in his chest (steri-stripped close).  Be still my pounding heart!

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*translation:  My baby sister made a mistake.  She kicked me off the bed and I fell on the floor and hit my head on the bedside table.

Musical beds

Do you have children?  Then you’ve probably played musical beds.  Those times where you wake up in a strange bed even though you distinctly remember getting into the right one the previous evening.  The worst times are those where you jump out of bed before you are awake (because even fast asleep a parent can distinguish the dull thud that means a toddler dreamt he could fly) to find out that you aren’t in your own bed and there is in fact a wall where you expected floor.  The imprint of the textured wall turns your forehead into an immediate conversation piece.  All things considered, it would be a lot less painful to show up at work in your underwear.  That way people will still converse about you but you won’t walk around with a splitting headache the whole day.  Think about it.

Back to the story.

Last night I watched Seabiscuit on TV while Wouter put the kids to bed.  Usually Wouter reads them Bible stories (note the plural) and then lies with Boeta in his bed while I take Carien to her bed.  Usually we both fall asleep with them in their beds and then wake up sometime during the night with the whole house still lit up like a Christmas tree.*  Boeat and Carien decided they didn’t want to sleep in their own beds and ended up with Wouter in our bed.  When I went to bed I planned on carrying the kids to their own beds but then this scene greeted me. 

How could I possibly disturb them?  So I ended up in Carien’s bed and Wouter soon after that found a kick-free space in Boeta’s bed.  Carien has a lethal kicking foot.  During the night Carien cried and I went to our bed, Boeta decided to join Wouter and Wouter then migrated to Carien’s bed. 

Moral of the story?  I have no idea.  Think up something and let me know.

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*Which reminds me.  Our outside tree is still decorated with all the Christmas things.  Even the string of lights is still hanging.  My dear husband must really do something about that soon.  Got that Baby?

URGENT PRAYER REQUEST

Many weeks ago I told you about Winé (12 years old, pronounced Vinnay) who has brain cancer.  She has been receiving chemo and radiation but is weakening fast.  She was supposed to be scanned in 2 weeks’ time but today it was moved forward to tomorrow at 10:00.  I’ve been praying for complete healing for her for a while but lately I’ve started believing the stats and was sort of praying against my better judgement.

I am getting a very strong message tonight that I shouldn’t write off God’s omnipotence that easily.  Please join me in prayer begging for Winé’s life.  Her parents and younger brother are standing so strong in the midst of this storm in their lives.  Please pray for strength for them too.

I am leaving you with this picture of her, taken earlier this year before she was diagnosed.

Wine

Miracles in pictures

I’ve been planning on doing a different post today but it seems I am meant to do one on miracles. 

Today everything has driven me towards posting about Boeta’s miraculous healing.  I’ve been meaning to scan his before & after heart sonars for weeks but I never get round to doing it.  Tonight I found the scanner cables and the sonar pictures at the same time.  And the printer worked and everything added up to me being able to do it.

As I opened the CT scan envelope that I stored the sonar pictures in I came across the scan report.  For some reason I haven’t read it until now.  That is very strange since I even read the nurses’ notes in Boeta’s file.  Back in March when Cristina phoned us to say that Woutertjie was clear of cancer I was too overwhelmed to think clearly and apparently too overwhelmed to look for the scan report.

Tonight that report hit me between the eyes.  The amazement of the radiologist is very clear.  He was witness to a miracle.

CT report page 1

CT scan report page 2

And then the sonar pictures of his heart.

On 5 January 2009 his heart looked like this:

2009-01-05 Boeta hart sonar

The “upside down T shape”  (below the label “TV”) shows the division between the top two heart chambers and the bottom chambers.  The grey spot labelled “T” and with dotted lines across it is the tumour.  At the bottom of the picture you can see that it measured 3.05cm x 3.02cm.  The area labelled “RA” is the right atrium of the heart.  “IVC” is the inferior vena cava.  It is the vein that brings blood back into the heart.  As you can see the tumour was fast on its way to completely blocking it.

And here is the after sonar.  On 19 March his heart looked like this:

2009-01-19 Boeta hart sonar 2

Now suddenly you can see the division between the right atrium (RA) and the heart chamber left of it.  And best of all, note the doctor’s note on the left:  Geen tumor (No tumour).

Here is another view of his healthy “after” heart.

2009-03-19 Boeta hart sonar

Can you believe your eyes?  The doctors couldn’t.

Now I need your help.

Yesterday I met the newest addition to Cristina’s oncology creche.  Chanté is 1y9m and is the sweetest little angel imaginable.  She looks remarkably like Carien and she really got to me.  Chante

Chanté has rhabdomyosarcoma (same as Boeta) in her chest.  She started with chemo yesterday.  I planned on doing a prayer request post for her yesterday but I was just too emotional.  So I held Carien close and cried my heart out for that little baby who looks at her mom with her big brown eyes and doesn’t understand why she is being hurt.  And yet as soon as the hurt is done and the vomiting stops she smiles again.

Please pray for this little girl and her family.  Charlotte, her mother, is so strong in her faith that God will heal her baby.  I will definitely keep you posted on Chanté’s progress.

Mixed emotions

Today was one of those days again.  High highs and low lows.  How many times do I have to repeat it?  I do not do rollercoasters.  Emotional or otherwise.

Woutertjie received no radiation on Monday because the doctors were worried that he might still be dehydrated from the weekend.  Yesterday he received his 22nd dose.  It didn’t go as well as the first 20 times though.  On Friday he started gagging as soon as the anaesthetic was injected but Elizna thought that it may have been too much saliva or something innocent like that.  Yesterday, thank God, they came prepared for something similar. 

As soon as the anaesthetic hit him Woutertjie started gagging and turned blue.  Elizna said afterwards that she suspects he has oesophagitis, a bit of reflux and lots of radiation-related irritation of his oesophagus and stomach, causing his larynx to go into spasm to protect his lungs from the stomach contents that pushes up.  Or something like that.  I’m just the mommy.  I can’t be expected to remember all the detail.  Sue me.

Either way, I haven’t seen Elizna and Nici work so quickly before.  I’ve never seen anyone literally turn blue before and I hope I never have to see it ever again.  It is very disturbing.  They sorted him out quickly and the rest of the session went smoothly. 

Afterwards Cristina (oncologist), Gerrit (paediatrician), Elizna (anaethetist) and Dr Jacobs (radiation oncologist) spent lots of time to-ing and fro-ing, trying to decide where to now.  For now he will not receive any more radiation this week and I am waiting to hear from Cristina whether he will receive any more at all.  The radiation is doing him no favours.  He is one very sick little boy at the moment.  And face it, there aren’t any tumours.  This makes it very difficult.  If there are tumours you can look at them to see if they are responding.  If there aren’t you are flying blind.

Woutertjie is struggling at the moment.  He hasn’t been eating at all since before the weekend.  A good day has him eating a spoonful of yoghurt and 4 jelly tots a day.  He weighed 19.1kg when he was diagnosed the 24th of December.  When radiation started 6 weeks ago he weighed about 17.5kg.  He was 16kg on Sunday and 15.4kg today.  That is major weight loss.  He has been on TPN (total parenteral nutrition) since Monday evening.  That means that he gets a milky mixture of all the nutrition he needs into his drip.  He managed to drink about 30ml of Energade this afternoon and hasn’t vomited since yesterday, so I have firm belief that he will start getting better soon now that the radiation has stopped.

Why did no one tell me that radiation is this bad?  My little fighter who didn’t lie down in the middle of chemo is wasting away.  He looks like a broken bird.  He was born at 4.2kg and has always been tall and big and strong.  Within 2 weeks he has gone from chemo-skinny to skeletal.  I can’t take it.  It is going to break me.

The high?  We are probably done with radiation. 

The low?  Here are the pictures.  See for yourself.

25 May 2006 - 1 year and 1 month old

25 May 2006 - 1 year and 1 month old

9 February 2008

9 February 2008

 

18 November 2008 - Still an innocent baby

18 November 2008 - Still an innocent baby - a month later he was diagnosed

 

29 December 2008 - 5 days after diagnosis and still naive and innocent

29 December 2008 - 5 days after diagnosis and still naive and innocent

19 January 2009 - 2 weeks after the start of chemo - loosing hair, weight and innocence

19 January 2009 - 2 weeks after the start of chemo - loosing hair, weight and innocence

 

12 May 2009

12 May 2009

Anaesthesia & radiation in pictures

Be warned – there are loads of photos in this post.  I can’t tell you what it is like to have to go through this every day but I can try and show you.  Thank you to each and every person in these photos for the role you are playing in our lives.  The photos were taken over two days to allow me to get all the detail.  So if the clothes don’t match, that is why.

Less said, more shown

I don’t have a lot to say today.  I know.  I am just as surprised as you are.  So I am not going to say a lot and instead post some photos.  I’ve been promising for long enough!

Remember I told you about the chaos when 3 boys of about the same age get chemo together?  Here they are!

boeta-3-musketiers

Woutertjie, Duran (aka Doring) and Enrico (aka Oom Nico).  Woutertjie isn’t very concerned with accuracy of names…!

 

Boeta with the Buzz Lightyear that the radiation “tannies” made for him.  They tried to make it nice for him but since he is knocked out everytime they gave the posters to him.  It has a place of honour on his bedroom wall!

boeta-buzz

 

Carien received this fairy hairband long ago and now she loves it.

carien-hoed

I’m pretty and I know it!

 

This is how any photo session usually ends in our house.  Carien desperately wants to have the camera.  To love, cuddle, carry around and then drop as soon as something else grabs her attention.  This child has the attention span of a drunk ant.

carien-huil

If you look closely you can see her tonsils. *rolls eyes*