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

Advertisements

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.

A day of firsts

Today was novel in many ways. 

 

1.  For the first time we are in a general ward.  All three the chemo kids were placed in a 4-bed ward out of the way of all the sick kids.  The private rooms are slap bang in the middle between the isolation ward (gastro, encephalitis, etc) and the “normal” germ wards.  Since the paediatric ward is chock-full at the moment it seemed the prudent thing to do.

This means that 3 boys aged 4-and-a-bit, 4-exactly and 3-and-a-half are sharing a room.  Oh my shattered nerves.  They all have Broviac lines (permanent drip lines) and are all used to extended chemo sessions.  But until now they haven’t met because they were always kept in isolation from everyone else.

They had so much fun.  When the time arrived for them to go on their drips the nurses had to place their drip stands in opposite corners of the room to keep them from getting snagged in each other’s lines.  They were counting the seconds until they were let loose.

 

1.  Boeta received his first radiation today.  He had general anaesthetic again since he is very scared of the machines.  He has to get a total of 33 daily treatments and if he doesn’t learn to lie still for it he will have to get general for every one. 

The anaethetist, Dr Elizna Basson, is really amazing.  By the time the porter arrived to take Boeta back to his room he was already sitting up and talking.  He wasn’t “all there” by a long shot but by the time we got to the room he was eating salt & vinegar chips and demanded Coke.  This woman knows her stuff!

 

1.  Today was the first session of Boeta’s new chemo drug, Irinotecan.  This is the excessively expensive one.  I heard this morning that Discovery is indeed paying for it.  Thank you God for yet another blessing!

I am quite anxious about how he will react to it as it can have nasty side-effects.  Please pray that Boeta will stay strong.

 

1.  For the first time since chemo started Woutertjie has normal white cell levels.  It was 9.1 this morning.  I am quite shocked! 😀  This shows that after 3 weeks without chemo his body can get things up and running again.  His Hb is still lowish (10) but not close to his all time low of 6.5.  Life is good!

Day 3 of 5

Boeta passed his pre-inspection and chemo may go ahead today.

Every morning he is checked out by both the paediatrician and the oncologist to make sure he is healthy enough to receive the day’s chemo.  And thank God, every day until now he has received the all clear.  So as soon as the chemo drugs arrive from the oncology unit he will start.  He is on a drip 24 hours anyway so it doesn’t bother him.  He is treating the tubes like extra arms – he isn’t even aware of them.

This morning he refused breakfast, apart from his (double portion) bacon.  He finished it and demanded more.  And when the hospital couldn’t deliver quickly enough he insisted that we phone my mother and tell her to bring some from home.  So any time now Ouma should arrive with his bacon.  Lots and lots of it because that is what he asked for and that is what he will get!  Grandparents.  *shakes head*

I asked my mom a while ago why she allows my children to do things that I wasn’t allowed to do.  She gave me The Look and said simply:  “You are my child.  I had to raise you well.  They are my grandchildren.  You have to raise them well.”  I couldn’t argue with the logic.

Wouter’s father, aka Oupa Skippie (Grandfather Boat because he has a rubberduck), has been staying with Boeta the last two nights.  They both love it!  When we leave they are usually sitting flat on the floor playing.  Ouma Skattie (Grandmother Dear) is looking after Carien today because my dad is going for an eye operation.  I think they are going to have lots of fun.  Carien is such a girly girl and loves drawing, colouring and anything pretty.  What do people without attentive family and friends do?  I don’t even want to think about how we would’ve struggled.  Thank you to all the grandparents, uncles, aunts, cousins, friends and supporters.

Boeta has now decided that he wants pink (strawberry flavoured) milk.  So I am off to find some.  Because chocolate milk is no good when you need to have pink.  Any bets that he will not want it by the time I get back? 🙂

Day 2 of 5

Well, Woutertjie is done with the second day of chemo.  Three more to go.  He is on a drip the whole time.  Literally.  Not that he lets it stop him.  He makes us cringe with the things he gets up to with the Broviac in tow.  We keep on cotton-balling him and he keeps on ignoring us.  So in summary we have a normal relationship. (Wouter is backseat-writing and he wants me to finish the previous sentence with an exclamation mark but I refuse.  I know you wanted to know this.)

Today was another good day.  Boeta is still refusing to eat any “normal” food.  Anything resembling a vitamin is firmly rejected with a “no mommy, I have a krokkenoster in my tummy” while any junk food is savoured.  Except for cherry tomatoes.  He still likes them.  Go figure.

I presented him this morning with his breakfast.  He refused.  I asked if he wanted droëwors (dried sausage for the non-SA readers).  He refused.  I took a looooong piece, told him that it was mine and that he was not to touch it under any circumstance.  He finished it within 5 minutes.  I dedicate this moment to my mother, who, using similar deplorable techniques, managed to raise 4 well-adjusted, somewhat-honest children.  But we are undoubtedly fabulous.

To get back to the point:  This is a 5 day chemo session.  Then Boeta has 2 weeks off with weekly blood tests but no chemo.  And then we redo this complete set of chemo treatments:  a 3 day treatment, 2 weeks of one day treatments and then a 5 day one.  After that, the week of the 17th March the re-assessment happens.  Then they redo all the scans and decide where to from here.

We need you to pray that they will see significant, if not total, reduction in the tumours.  Specifically please pray that the tumour in his heart will disappear.  That is the biggest concern because everytime he needs to get anaesthesia it presents a huge risk.  A tumour can be surgically removed from many places but not from inside the heart.

Thank you so much for reading our blog and for commenting and please feel free to give the link to others!  We appreciate your prayers and support more than we could ever tell you.  Thank you.

What a beautiful day

All in all yesterday was a good day.  Factually, that is.  Emotionally not so much!

Yesterday we heard that:

1.  Boeta gained weight!  He was 19.1kg when he was diagnosed, dropped to 16.6kg last Thursday when he was admitted and yesterday he weighed 17kg.  He is eating OKish at the moment provided we give him what he feels like at that particular moment.  He can’t tell us what he feels like so we just guess, guess, guess!  Maybe he wants some wild boar (thanks for that, Lea!).

2.  He’s been feverish every single evening and the paediatrician worried that there may be infection in his Broviac.  So yesterday they did a chest xray and it is clear.  Thank God!  If there was infection they would’ve had to operate again to remove it and insert another one. 

3.  The cardiologist came by to do an ECHO (sonar) to check that the Broviac is OK.  It is.  Added to that she looked at the tumour in his heart and it hasn’t gotten bigger.  That is good news too.

4.  His white blood counts are up.  It should be between 5 and 15.  His was 0.5 when admitted last Thursday, it dropped to 0.4 on Saturday, increased to 0.7  on Monday and yesterday it leaped to 1.5!  He has been getting bone marrow boosting injections on his thighs.  Later today I probably will repost yesterday’s update since I have to assist with holding him for it.  They put local anaesthetic patches on but since those are plasters and it is then followed by the injection he goes mad.  Please pray for us.

No! Mommy! Help me!

Today Boeta’s plasters covering the Broviac line (permanent drip in his chest) were changed again.  I can’t stand it anymore.  He has become scared of plasters because they have to be removed and it hurts.  Now he screams and cries as soon as anyone mentions the word and I have to try and calm him down while the nurses do it as quickly as possible. 

It all started on Christmas Day.  He had to get general (full) anaesthetic for his CT scan on the 24th and they taped the 2 drips to his arms with those wide, white plaster.  From wrist to upperarm.  So on Christmas Day after seeing the oncologist the drips had to be removed and they had to pull off all that plaster.  He was screaming with pain and I had to help calm him down.

The nurses in the paediatric ward have been wonderful with his drips – they put gauze against his skin so the plaster didn’t hurt him.  But now the Broviac needs to be held in place against his chest and they want to change the plasters daily…

Boeta hates being held down.  This is also a new thing – he never minded before.  After a couple of xrays and plasters he now goes ballistic about it.  So I tell him that he can hold onto my hands while they are doing the plaster, meanwhile I grip his hands as tightly as possible to keep him from pulling on the line while trying to fight the nurses off.  It is getting to me in a big way and I just have to suck it up and deal with it.  I don’t want to have to hold my baby down.   I don’t want to have to tell him that it is almost over.  I want him to run around and feel better.  I want him to be healthy.  I want him to be muddy and filthy and tired from chasing the dogs around. 

I don’t want to hear him crying to me for help and I can’t do anything to make it better.