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.

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

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.

Note to self: never plan

I’ve always been a planner.  I thrive on predictability.  Most people don’t know this because I don’t keep a diary or dayplanner or anything like that.  But I’ve got it all up here *taps head*.  Wouter has tried to convert me to project planning software but after many years he had to admit that I don’t need software.  I’m doing pretty well on my own.

This year is teaching me to be adaptable.  In a big way.

Woutertjie has been very nauseous the last few days, with the frequency and intensity of vomiting increasing daily.  The Zofran (ondansetron) isn’t working any more.  This morning even I could see that he was dehydrating.  The skin on his stomach was “soft” and “wrinkly”.  So we went to hospital a bit earlier than usual and me being me, I told the nurses that he needed fluid.  No asking, just telling.  It is a good thing they know and love me! 😀  Gerrit came to have a look and agreed with my diagnosis and recommendation.  See?  I could be a paediatrician.

He received 600ml of half-DD (saline with dextrose – a type of sugar) and 200ml of chemo by the time he went for radiation and didn’t urinate once.  He really needed fluid.  Cristina changed his anti-nausea drugs and it seems like he is feeling better now.

Gerrit recommended and we agreed that it would be the prudent thing to do to keep Boeta in hospital overnight on a drip.  This week he is receiving chemo, radiation and anaesthetic every single day.  One of these would be enough to flatten an adult.  All three together?  Eish.  It is a lot better for him to keep hydrated and to actually eat and digest something.  He currently weighs 16kg.  He was diagnosed on 19kg.  He has dropped about 15% of his body weight and he wasn’t chubby to start with.  I really looked at him yesterday as I was dressing him.  His is skin and bones.   His ribs and backbone are clearly visible.  His arms look fragile-thin.  His knees are huge bumps on his tiny legs.  He looks sick.

At least he seemed to want to make up for lost kilojoules now that he is feeling less nausesous.  He had a small packet of chips and a small container of yoghurt by the time I left tonight.  And he seemed to be keeping it in.  This is a huge improvement.

Next week and the week after he is having a break from chemo.  He is continuing with radiation though but will finish his sessions the week after next.  And the week after that we start with the next block of chemo.  It will be the same that he received right in the beginning.  He wasn’t as nauseous on that so we are hoping that he will pick up some weight then.  Please carry us in your prayers for the next days and weeks.  Once the radiation is done we will have reached a huge milestone.  He has 9 sessions left.

13/28 and we are home!

There are some things that I’ve wanted for years but no one ever gifted me with it.  One of them is a set of salad spoons and the other a proper pancake pan.  Let me add that I never even looked to buy it for myself because it was fun to see how long I would not have it and still get by.

Imagine my delight when I received both of the above for Christmas and my birthday last year.  Actually, Christmas and my birthday (on Christmas Day) are a bit of a blur as Boeta was diagnosed on the 24th and we rushed him to hospital on the 25th with fever and unresponsive.  But now that things have settled I am delighted!

I’ve used the salad spoons before but tonight I used the pancake pan for the first time.  Oh my word.  It is so much easier with a light, thin-bottomed pan!  I should’ve bought one long ago.  Now I just need another one to speed up the baking…..  Any bets on how many years will pass before I get one? 😀

The day off from radiation and the different nausea meds they gave him really did the trick.  Boeta is feeling so much better!  As he stopped vomiting we were sent home on Friday evening.  Boeta has discovered toasted cheese sandwiches and Fanta Grape.  Needless to say his diet is very predictable at this stage.

The most amazing thing happened yesterday.  Since the start of this whole journey Boeta had a thing against scans / x-rays /  radiation machines and the people who operate it.  In particular he hated the “Buzz Lightyear spaceship” (the radiation machine) which is why he has to get anaesthetic every time.  He wouldn’t even go near the corridor leading to that unit.  Yesterday we were taking a leisurely stroll through the hospital, we had tea in the cafeteria, we watched the Kois in the fish pond and then I asked if he wanted to go and visit the “tannies” at the Buzz Lightyear spaceship.  And he said yes.  I’ve been asking the same question for weeks in an attempt to get him to get him to face his fear but he usually screams as soon as I suggest it.  I started in that direction (he was taking it easy in a wheelchair) but expected him to change his mind at any time. 

We went through the doors leading to the corridor.  And he didn’t stop me.

We walked all the way down the corridor.  And he didn’t stop me.  In fact, it slopes downhill and he kept on urging me to let go of the chair so that he could go fast like Lightning McQueen. *insert rolling eyes here*

We even met Elizna, the anaethetist and Nici, the right-hand nurse on the way.  He hugged them, told them looooong stories and simply was having a good time.  He never mentioned the “white medicine” once. 

I still didn’t think he would actually go into the radiation unit.  My son astounded me and all the staff.  We went to right outside the radiation chamber and he had loads of fun chatting to the radiotherapists who usually only see him when he is anaethetised.  He also loved watching the other patients receiving radiation on the monitors.  And he was Alex the lion and chased Marileze (the radiotherapist) who was Marty the zebra (refer the movie Madagascar) up and down.  I had to drag him away. 

Later he received his anaesthetic and radiation and woke up with a big, drugged smile.  He seems to have made peace with the white medicine and the radiation.  I am so grateful.  Dealing with his fear has been very hard on me and very hard on him.  I’ve prayed so long for this and I am so grateful!

The way of things

The one thing I just don’t understand is Life.  Well, there are a lot of things I don’t understand (like why vinegar socks are supposed to help for fever) but one of them is life.  Every day I plan on writing a upbeat post and every day before I get to write it, something happens to make me forget about the upbeat post.  And then I write long, rambling piece trying to get to grips with whatever happened.

Today the same sequence of events took place.  I was on the verge of writing a minute by minute runthrough of the day and then I decided not to.  Can you spot the rebellion?  I am very proud of myself.  Whoo hoo!  I’m a rebel!  I fail to follow my own rules!

Yip, I’m a sad case.  I know.

So today I am not going to tell you that the radiation people phoned this afternoon to say that they want to do a “before” scan of Boeta for planning purposes.  I am also not going to tell you that the play therapist and I spoke and agree that there is no way that he is going to lie still for it.  And finally I am not going to tell you that he will probably need to get anaesthetic for the scan on Friday. 

I am going to tell you about the good things.

Boeta is doing so well.  We have our pre-cancer son back this week.  He is raucous, wild and adorable.  And he never stops eating.  I caught him on the loo today eating a bag of chips.  He eats breakfast at our house, then he has breakfast at my parents’ house, then he starts snacking until lunch…  I love every moment of it. 

I am not looking forward to next week and Boeta being sick again.  Please pray that he deals well with the adjustment to being in hospital on a drip again – it is very hard for him to keep still for so long.  According to the doctors the side-effects of the new drug is severe – please pray that Boeta will not have any.  Also please keep Wouter and I in your prayers.  It is hard to see our “healthy” son running around knowing that we are going to take him to be poisoned again.  I know it is for the greater good and all but I would prefer if this whole thing could just end now.

Carien is doing so well.  She is 1y7m and is very busy potty training.  If you saw her in action you will see that she is indeed very busy and not just busy.  This child of ours!  She is very eager to do her thing on the potty but not so eager to do it every single time.  Life awaits!  There are so many other things to do! 

Today she is driving me up the walls.  She is very much a mommy’s girl at the best of times but today you’d think we are siamese.  Oh well, tomorrow will be here soon enough.

Right now I have to try and disentangle myself from Carien’s clutches and start baking Boeta’s birthday cake.  For the 3D effect I will need cake that is a bit on the older side.  “Firm” sounds so much better than 3 days old, don’t you think?

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.