Day 6

For the record, prayer works.  But then, we should know that by now.

This morning on my way to hospital I begged God to bless Woutertjie with His healing power.  I’ve been lax the last while.  Boeta has been doing well, making it easy to “exclude” God from our day to day business.

And you know what?  Today has been miraculous. 

Firstly I met Gerrit on my way in.  We chatted for a bit.  I’ve been feeling very guilty for “allowing” Boeta to get sick.  Why didn’t I keep him and Carien apart as soon as she started developing a cold?  Why didn’t I keep Boeta masked the whole time at home?  And Cristina has been fueling my guilt trip even more.  She has read me the riot act about neutropenia and prevention of infection. 

Gerrit derailed my guilt trip train completely.  He decided that I should blame him, since I informed him when Carien started getting ill and he could’ve done something about it then already.  So officially I am laying the blame at his feet.  It is good that we aren’t American.  Gerrit’s parting shot was:  “So sue me!” 😀

Today Boeta is off anti-nausea meds, off fever meds and he hasn’t been nauseous and his temperature has started dropping this morning.  By tonight he was just about fever-free.  What a blessing!

His rash has also started disappearing, although his cheeks, arms and legs are still covered.  Since his platelets are lowish (46) he has pinprick marks all over his face and scalp from coughing.  It is freaky to think that coughing can cause bleeding…  But his coughing is a lot better, his nose is less runny and here is the clincher – today’s nasal wash is negative for RSV!  This is wonderful news as it means that the virus is now out of his system. 

After 5 days of GCSF boosters Boeta’s white cell count is 0.4 today.  It is starting to climb.  His Hb is low though (6.8) and he will get a blood transfusion tomorrow.  It will be his 6th. 

By tonight Boeta had eaten (shock, horror! :-D) almost 2 hotdog buns with tomato sauce.  He asked for “so ‘n ronde bans met matiesous”.  It is a good thing I am the mommy otherwise I wouldn’t have understood what exactly he wanted!  I have to add that he got some tough love today.  The nursing staff are making “sterk stem” with him, telling him to eat or else.  So he is eating.  I am the good cop in all of this, choosing his side and begging him to eat so we won’t get into trouble with the nurses.  So far it is working and that is all that matters.

I have to brag with Carien now.  2 days ago my mom and Carien (1y9m)were stuck outside their automatic gate without a remote.  So my mom lifted Carien through the gate and told her to go and fetch the remote in the house.  Lo and behold, she dodged the dogs and the next thing the gate opened for my mom.  Carien didn’t even bother to bring the remote to the gate, she simply opened the gate from inside the house! 😀 😀  That child is too smart for her age.

She misses Boeta something terrible.  She is constantly asking about him or telling us that he is in hospital.  My poor baby.  She adores him and is feeling very lost without someone to copy.

But we are good.  Very good.

With any luck we may get out of hospital before Boeta’s 5 day chemo starts in a week’s time! 🙂

Advertisements

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

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!

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!

Looking back

It has taken me a long time to understand and accept the scope of the miracle that God has bestowed upon us. 

Yesterday while I was waiting for Woutertjie to wake up following his scan Cristina came past and we spent quite some time chatting.  Me sitting in the hospital chair with Boeta curled up in my arms sleeping the sleep of innocents. 

She says that she has never seen results like Boeta’s.  And for this reason she is now more worried about him than at the start of treatment – back then there was no risk.  He was going to die without treatment and she could basically try anything.  Now he is “healthy” in that he has no clinical signs of cancer.  Suddenly the risks are huge. 

Chemotherapy means that you poison the whole to kill the bits.  How far should you go about poisoning a healthy whole to kill bits that may or may not be there?  Chemo can lead to different cancers later in life.  It is a catch-22 of the highest quality.  And all we can do is pray for wisdom for the doctors.  So far they have reconsidered many parts of the treatment.  Boeta isn’t getting the operation that is an integral part of the treatment, for example.  Thank God for granting wisdom.

Cristina said yesterday that she didn’t expect Boeta to survive to celebrate his 4th birthday.  And here we are, done with his party and celebrating his birthday tomorrow.  He is doing well and had lots of fun with his friends.  He is (once again) eating like there is no tomorrow.  He gained more than 1.5kg in 10 days! 😀

I’ve been wondering for a long time, since this started in fact, why this happened to us.  And I’ve had a feeling that God may be preparing me / us for something special.  Yesterday in hospital I overheard the family of a 12 year old girl talking.  She was diagnosed with an aggressive brain tumour on Tuesday.  On a whim I walked over and shared our story with them.  I think it did them good to hear it but it definitely did me good to tell it.  They are from a town about 20 minutes from where I finished school and they know my parents.  In the end I gave them a crash course on cancer, chemo and hospital life.  I really wish there was someone around when Woutertjie was diagnosed to tell me that I will sleep again (once the body gets too tired to be overridden by worrying), that I will start to understand the medical terms being thrown around and that life will go on.  The closest person I had was Lea, whom I met online and who has been a sanity saver more than once.  She advised me to start a blog.  There is no way I could’ve made it this far with any semblance of sanity (no comment from the peanut gallery about my perceived sanity please) if I didn’t unload here.

Please spare a prayer for this beautiful girl.  I have to find out from her parents if I may mention her name here.  She needs all the prayers she can get.