Childrens Health

My Son’s Tummy Ache Turned out to be Stage 4 Neuroblastoma

My name is Natalie, and I’m the mum of 9-year-old Rafael (or Raf, as he is often called).

I’m also the mother of 6-year-old Sam, wife of Mick, a dog-mumma, daughter, sister, friend, employer, and average human.

Raf having stage 4 neuroblastoma has made these other things take a back seat over the past two years, but if we are going to talk childhood cancer and the true impact it has, we need to look at the whole picture.

Society readily acknowledges that it takes a village to raise a child…  yet the cancer journey, or any path involving chronic illness, can be an isolating one as most people don’t know how to process such devastating and confronting situations, especially when there are uncertain outcomes.

Everyone handles it differently and every story is different.

Raf's story - Stage 4 neuroblastoma
Source: Supplied

This is Raf’s story: 

For us, Raf’s cancer diagnosis was very unexpected.

He had always been a well and happy child and had hit all developmental milestones. He had turned seven two weeks earlier and we had done the traditional height/weight measurements (as you do every year), and he looked as he always had.

It started with a sore tummy

He complained of a stomach ache on a Monday, which the GP reviewed and sent off blood and urine (which all came back without infection or anything sinister).

He wasn’t the sort of kid to complain, so when he still had a sore tummy by that Thursday and I couldn’t get into the GP, I took him to the hospital. We’re from a regional town in Northern NSW, and this was the thick of COVID.

ED triage took ages, as he seemed otherwise fine compared to everyone else presenting there. It wasn’t until they weighed him that I realised he had lost 5kg (or 20% of his body weight) in those two weeks since his birthday.

The ED doctors questioned him, palpated him, took more blood, and still came to no conclusion. We were fortunate that the paediatric registrar overheard me ask them for further review given the significant weight drop and booked him for an ultrasound and CT.

Scans were done the next day and we were then informed of what they had found.

When I say informed, I mean that I was in the hospital with the paediatrician on FaceTime to Mick (because of the one parent per child rule during COVID) when they told us that our child had a 5x7cm mass and was being transferred immediately to Brisbane via ambulance for investigation and treatment.

Raf was diagnosed with stage 4 neuroblastoma – a cancer of the adrenal gland that sits on top of the kidney.  It’s sneaky and aggressive… and exactly why neuroblastoma has such poor clinical outcomes.” 

His primary mass was actually 5 x 7 x 12cm (so, roughly the size of his forearm), plus lymph nodes below his renal vein, plus every bone from the neck down.

Stage 4 Neuroblastoma diagnosis a huge shock to everyone

As a choice, we don’t tend to talk diagnosis/prognosis, as it’s not something we have any control over.

That’s not fair on Raf, who barely understood what he was having to go through, or on me, who was trying to do all I could to save my kid yet still give him the best quality of life through treatment. We were very fortunate to have a tremendous oncologist with the same thinking, who banned Dr Google from the day I met him.

Within 48 hours, I had gone from being a pharmacist in a small town in NSW, working 70-80 hours per week in her own business, to being in Queensland, in the thick of COVID, across a border that was otherwise closed, with an unexpected cancer diagnosis, and trapped in isolation with my sick child.  My husband had always raised our kids while I worked so this was a complete change. 

We physically, socially and emotionally walked out of our old lives and never got back there.”

‘The reality is, we were lucky’

Raf and I didn’t see Mick or Sam for almost four months as they couldn’t cross the state border or meet Queensland Health requirements during the pandemic. This was particularly tough as Mick and I have been together since high school, and Mick and Raf were kind of a pair.

I’m not one of those airy-fairy people who believes everything happens for a reason – I mean, what kid deserves cancer or any chronic illness – but I do believe in perspective.

Because… the reality is, we were lucky. Raf was referred and treated straight away.”

Queensland Health has been exceptional, and I am so grateful for their reciprocity in allowing Raf to receive care here.

Although we are from New South Wales, Queensland Children’s Hospital is our closest treating hospital. I cannot speak more highly about them, for their exceptional commitment to the pursuit of optimal treatment for childhood illness. Their recognition as the highest-ranked children’s hospital in Australia and the Southern Hemisphere is well-deserved, and to think that a public hospital can attain a top 10 ranking worldwide is nothing short of remarkable.

Raf - Stage 4 Neuroblastoma - Children's Hospital
Source: Supplied

Bluntly, I do not believe that Raf would be here without this hospital, his oncologist and allied health team, his immediate access to gold-standard treatment, or the development in recent years of therapy for his type of cancer.

Because the reality, for those that prefer statistics, is that high-risk neuroblastoma has a 50% survival rate at five years, with a 50% chance of relapse, and 5% survival rate, should that happen.

This is exactly why we don’t talk that way, as you wouldn’t even get out of bed in the morning.

Without research into childhood cancer, Raf would not be here…

We have met other kids through this process who are relapse kids… they may not have been relapse kids if they had had access to some of the newer chemo combinations, or stem cell therapy, or immunotherapy – all of which Raf has had.

Over 19 months Raf had six cycles of induction chemotherapy in various combinations and strengths, surgical resection of his primary mass and associated lymph nodes, two cycles of high-dose chemo with tandem stem cell transplants, 10 fractions of radiation, then a further six cycles of oral chemo with five cycles of immunotherapy.

Immunotherapy isn’t a matter of improving life for kids like Raf – in fact, the treatment protocol itself is pretty brutal – but it saves lives like Raf’s.

In many types of cancer, immunotherapy, as developed by the Ian Frazer Centre for Children’s Immunotherapy Research, is like a long-term investment to strengthen Raf’s body to fight cancer cells should they appear again, or to buy time in relapse kids, to keep them here until a cure can be found.” 

First Christmas at home in years 

So, where are we now? I’m relieved and delighted to tell you that Raf’s most recent scans showed no evidence of disease and that in October, on his 9th birthday, he rang the bell to signify the end of his oncology treatment.

We are still navigating the path to find our new “normal”.

Raf's cancer journey - stage 4 neuroblastoma
Source: Supplied

Raf missed 15 months of school and still struggles with fatigue and brain fog. Chemotherapy has left him with significant hearing loss and he has had hearing aids fitted. He has been in and out of glasses as his eyesight restabilised post-immunotherapy, and he had to re-establish his continence for the same reason.  He is still working on gross motor development and regaining muscle strength after long periods of inactivity and time spent in bed.

And that is just the physical stuff. The social and emotional impact is significant.

And that is just him…

But… after spending the last two festive seasons in hospital with Raf in very poor health, we are grateful this year to have a boring and quiet Christmas outside of those walls. After so much time spent apart, we are content to simply be together.” 

Raf's story - stage 4 neuroblastoma
Raf is cancer-free! Source: Supplied

This year, Raf was also the face of the Children’s Hospital Foundation’s Christmas Appeal. I believe the importance of initiatives like the Children’s Hospital Foundation’s Appeal is that it brings public awareness to issues like chronic childhood illness … and the difference that everyone can make.

We lost two years to isolation and cancer life

I will be the first to admit I never thought something like this could happen to us. But, for us though, it did happen. Cancer happened.

We’ve relocated our home and business, lost family and friends during the process, missed countless milestones, and had to start again.

But… we are fortunate enough to ALL be here to do that, thanks to organisations like the Foundation and their supporters.

Children’s Hospital Foundation funds and runs in-hospital activities and support for thousands of families each year but, importantly, they also fund life-changing research through institutes such as the Ian Frazer Centre for Children’s Immunotherapy Research. Without this, our kids would not be here, and they would certainly not have the opportunity to live long, happy, and healthy lives.

A $5 donation is all it takes

Christmas may be over, but the cancer fight never ends and thus neither does the need to give.

Trust me; after two years of not working (and not being eligible for funding), I am acutely aware of the financial pressures facing everyone today. I understand the sentiment of many people that corporate sponsorships and Government funding should cover health and research.

But… I challenge people to review this perspective for a moment…

There are over 26 million Australians. Imagine if even 1% of them decided to make a $5 or $10 donation rather than buy a cup of coffee or a beer.

It is this shift in focus that could be the game-changer for health and research in Australia…

Please, consider being in this 1% and donating. A one-off donation, a once-a-month donation, a whatever-you-can donation.

I’d challenge anybody to tell me that these kids aren’t worth $5.

This story was written by Natalie Oaten. 

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