My identify is Natalie, and I’m the mum of 9-year-old Rafael (or Raf, as he’s typically referred to as).
I’m additionally the mom of 6-year-old Sam, spouse of Mick, a dog-mumma, daughter, sister, good friend, employer, and common human.
Raf having stage 4 neuroblastoma has made these different issues take a again seat over the previous two years, but when we’re going to discuss childhood most cancers and the true affect it has, we have to take a look at the entire image.
Society readily acknowledges that it takes a village to lift a toddler… but the most cancers journey, or any path involving persistent sickness, might be an isolating one as most individuals don’t know course of such devastating and confronting conditions, particularly when there are unsure outcomes.
Everybody handles it otherwise and each story is totally different.
That is Raf’s story:
For us, Raf’s most cancers analysis was very surprising.
He had all the time been a nicely and comfortable little one and had hit all developmental milestones. He had turned seven two weeks earlier and we had executed the standard peak/weight measurements (as you do yearly), and he appeared as he all the time had.
It began with a sore tummy
He complained of a abdomen ache on a Monday, which the GP reviewed and despatched off blood and urine (which all got here again with out an infection or something sinister).
He wasn’t the kind of child to complain, so when he nonetheless 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 city in Northern NSW, and this was the thick of COVID.
ED triage took ages, as he appeared in any other case wonderful in comparison with everybody else presenting there. It wasn’t till they weighed him that I realised he had misplaced 5kg (or 20% of his physique weight) in these two weeks since his birthday.
The ED docs questioned him, palpated him, took extra blood, and nonetheless got here to no conclusion. We had been lucky that the paediatric registrar overheard me ask them for additional overview given the numerous weight drop and booked him for an ultrasound and CT.
Scans had been executed the following day and we had been then knowledgeable of what they’d discovered.
Once I say knowledgeable, I imply that I used to be within the hospital with the paediatrician on FaceTime to Mick (due to the one guardian per little one rule throughout COVID) after they informed us that our little one had a 5x7cm mass and was being transferred instantly to Brisbane by way of ambulance for investigation and remedy.
Raf was identified with stage 4 neuroblastoma – a most cancers of the adrenal gland that sits on high of the kidney. It’s sneaky and aggressive… and precisely why neuroblastoma has such poor scientific outcomes.”
His major mass was really 5 x 7 x 12cm (so, roughly the scale of his forearm), plus lymph nodes beneath his renal vein, plus each bone from the neck down.
Stage 4 Neuroblastoma analysis an enormous shock to everybody
As a alternative, we don’t have a tendency to speak analysis/prognosis, because it’s not one thing now we have any management over.
That’s not honest on Raf, who barely understood what he was having to undergo, or on me, who was making an attempt to do all I may to avoid wasting my child but nonetheless give him the highest quality of life via remedy. We had been very lucky to have an amazing oncologist with the identical pondering, who banned Dr Google from the day I met him.
Inside 48 hours, I had gone from being a pharmacist in a small city in NSW, working 70-80 hours per week in her personal enterprise, to being in Queensland, within the thick of COVID, throughout a border that was in any other case closed, with an surprising most cancers analysis, and trapped in isolation with my sick little one. My husband had all the time raised our youngsters whereas I labored so this was an entire change.
We bodily, socially and emotionally walked out of our previous lives and by no means acquired again there.”
‘The fact is, we had been fortunate’
Raf and I didn’t see Mick or Sam for nearly 4 months as they couldn’t cross the state border or meet Queensland Well being necessities throughout the pandemic. This was significantly robust as Mick and I’ve been collectively since highschool, and Mick and Raf had been type of a pair.
I’m not a kind of airy-fairy individuals who believes the whole lot occurs for a cause – I imply, what child deserves most cancers or any persistent sickness – however I do imagine in perspective.
As a result of… the fact is, we had been fortunate. Raf was referred and handled immediately.”
Queensland Well being has been distinctive, and I’m so grateful for his or her reciprocity in permitting Raf to obtain care right here.
Though we’re from New South Wales, Queensland Youngsters’s Hospital is our closest treating hospital. I can’t converse extra extremely about them, for his or her distinctive dedication to the pursuit of optimum remedy for childhood sickness. Their recognition because the highest-ranked kids’s hospital in Australia and the Southern Hemisphere is well-deserved, and to assume {that a} public hospital can attain a high 10 rating worldwide is nothing wanting exceptional.
Bluntly, I don’t imagine that Raf could be right here with out this hospital, his oncologist and allied well being workforce, his instant entry to gold-standard remedy, or the event in recent times of remedy for his sort of most cancers.
As a result of the fact, for those who favor statistics, is that high-risk neuroblastoma has a 50% survival charge at 5 years, with a 50% likelihood of relapse, and 5% survival charge, ought to that occur.
That is precisely why we don’t discuss that manner, as you wouldn’t even get away from bed within the morning.
With out analysis into childhood most cancers, Raf wouldn’t be right here…
We now have met different children via this course of who’re relapse children… they could not have been relapse children if they’d had entry to among the newer chemo mixtures, or stem cell remedy, or immunotherapy – all of which Raf has had.
Over 19 months Raf had six cycles of induction chemotherapy in varied mixtures and strengths, surgical resection of his major mass and related lymph nodes, two cycles of high-dose chemo with tandem stem cell transplants, 10 fractions of radiation, then an additional six cycles of oral chemo with 5 cycles of immunotherapy.
Immunotherapy isn’t a matter of enhancing life for teenagers like Raf – the truth is, the remedy protocol itself is fairly brutal – nevertheless it saves lives like Raf’s.
In lots of sorts of most cancers, immunotherapy, as developed by the Ian Frazer Centre for Youngsters’s Immunotherapy Analysis, is sort of a long-term funding to strengthen Raf’s physique to combat most cancers cells ought to they seem once more, or to purchase time in relapse children, to maintain them right here till a treatment might be discovered.”
First Christmas at residence in years
So, the place are we now? I’m relieved and delighted to let you know that Raf’s most up-to-date scans confirmed no proof of illness and that in October, on his 9th birthday, he rang the bell to indicate the tip of his oncology remedy.
We’re nonetheless navigating the trail to search out our new “regular”.
Raf missed 15 months of faculty and nonetheless struggles with fatigue and mind fog. Chemotherapy has left him with important listening to loss and he has had listening to aids fitted. He has been out and in of glasses as his eyesight restabilised post-immunotherapy, and he needed to re-establish his continence for a similar cause. He’s nonetheless engaged on gross motor growth and regaining muscle energy after lengthy intervals of inactivity and time spent in mattress.
And that’s simply the bodily stuff. The social and emotional affect is important.
And that’s simply him…
However… after spending the final two festive seasons in hospital with Raf in very poor well being, we’re grateful this 12 months to have a boring and quiet Christmas exterior of these partitions. After a lot time spent aside, we’re content material to easily be collectively.”
This 12 months, Raf was additionally the face of the Youngsters’s Hospital Basis’s Christmas Enchantment. I imagine the significance of initiatives just like the Youngsters’s Hospital Basis’s Enchantment is that it brings public consciousness to points like persistent childhood sickness … and the distinction that everybody could make.
We misplaced two years to isolation and most cancers life
I would be the first to confess I by no means thought one thing like this might occur to us. However, for us although, it did occur. Most cancers occurred.
We’ve relocated our residence and enterprise, misplaced household and mates throughout the course of, missed numerous milestones, and needed to begin once more.
However… we’re lucky sufficient to ALL be right here to try this, because of organisations just like the Basis and their supporters.
Youngsters’s Hospital Basis funds and runs in-hospital actions and help for 1000’s of households annually however, importantly, in addition they fund life-changing analysis via institutes such because the Ian Frazer Centre for Youngsters’s Immunotherapy Analysis. With out this, our youngsters wouldn’t be right here, and they’d actually not have the chance to dwell lengthy, comfortable, and wholesome lives.
A $5 donation is all it takes
Christmas could also be over, however the most cancers combat by no means ends and thus neither does the necessity to give.
Belief me; after two years of not working (and never being eligible for funding), I’m conscious about the monetary pressures going through everybody at this time. I perceive the sentiment of many individuals that company sponsorships and Authorities funding ought to cowl well being and analysis.
However… I problem individuals to overview this angle for a second…
There are over 26 million Australians. Think about if even 1% of them determined to make a $5 or $10 donation reasonably than purchase a cup of espresso or a beer.
It’s this shift in focus that might be the game-changer for well being and analysis in Australia…
Please, think about being on this 1% and donating. A one-off donation, a once-a-month donation, a whatever-you-can donation.
I’d problem anyone to inform me that these children aren’t value $5.
This story was written by Natalie Oaten.
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