My title is Natalie, and I’m the mum of 9-year-old Rafael (or Raf, as he’s usually 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 impression it has, we have to have a look at the entire image.
Society readily acknowledges that it takes a village to boost a toddler… but the most cancers journey, or any path involving persistent sickness, will be an isolating one as most individuals don’t know how you can course of such devastating and confronting conditions, particularly when there are unsure outcomes.
Everybody handles it in a different way and each story is totally different.
That is Raf’s story:
For us, Raf’s most cancers prognosis was very sudden.
He had at all times been a properly and joyful youngster and had hit all developmental milestones. He had turned seven two weeks earlier and we had carried out the normal top/weight measurements (as you do yearly), and he appeared as he at all times 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 type 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 nice 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 medical doctors questioned him, palpated him, took extra blood, and nonetheless got here to no conclusion. We have been lucky that the paediatric registrar overheard me ask them for additional evaluate given the numerous weight drop and booked him for an ultrasound and CT.
Scans have been carried out the following day and we have 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 mother or father per youngster rule throughout COVID) after they informed us that our youngster had a 5x7cm mass and was being transferred instantly to Brisbane through ambulance for investigation and therapy.
Raf was identified with stage 4 neuroblastoma – a most cancers of the adrenal gland that sits on prime of the kidney. It’s sneaky and aggressive… and precisely why neuroblastoma has such poor medical outcomes.”
His main mass was really 5 x 7 x 12cm (so, roughly the scale of his forearm), plus lymph nodes under his renal vein, plus each bone from the neck down.
Stage 4 Neuroblastoma prognosis an enormous shock to everybody
As a selection, we don’t have a tendency to speak prognosis/prognosis, because it’s not one thing now we have any management over.
That’s not truthful on Raf, who barely understood what he was having to undergo, or on me, who was attempting to do all I may to avoid wasting my child but nonetheless give him the very best quality of life by means of therapy. We have been very lucky to have an amazing oncologist with the identical considering, 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 sudden most cancers prognosis, and trapped in isolation with my sick youngster. My husband had at all times raised our children whereas I labored so this was a whole change.
We bodily, socially and emotionally walked out of our outdated lives and by no means received again there.”
‘The truth is, we have 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 through the pandemic. This was significantly robust as Mick and I’ve been collectively since highschool, and Mick and Raf have been type of a pair.
I’m not a type of airy-fairy individuals who believes every thing occurs for a motive – I imply, what child deserves most cancers or any persistent sickness – however I do imagine in perspective.
As a result of… the truth is, we have 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 Kids’s Hospital is our closest treating hospital. I can’t communicate extra extremely about them, for his or her distinctive dedication to the pursuit of optimum therapy for childhood sickness. Their recognition because the highest-ranked kids’s hospital in Australia and the Southern Hemisphere is well-deserved, and to suppose {that a} public hospital can attain a prime 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 staff, his speedy entry to gold-standard therapy, or the event in recent times of remedy for his kind of most cancers.
As a result of the truth, for people who want statistics, is that high-risk neuroblastoma has a 50% survival price at 5 years, with a 50% likelihood of relapse, and 5% survival price, ought to that occur.
That is precisely why we don’t discuss that approach, 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 have now met different youngsters by means of this course of who’re relapse youngsters… they could not have been relapse youngsters if they’d had entry to a number of the newer chemo combos, or stem cell remedy, or immunotherapy – all of which Raf has had.
Over 19 months Raf had six cycles of induction chemotherapy in varied combos and strengths, surgical resection of his main 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 youths like Raf – in reality, the therapy protocol itself is fairly brutal – however it saves lives like Raf’s.
In lots of varieties of most cancers, immunotherapy, as developed by the Ian Frazer Centre for Kids’s Immunotherapy Analysis, is sort of a long-term funding to strengthen Raf’s physique to struggle most cancers cells ought to they seem once more, or to purchase time in relapse youngsters, to maintain them right here till a treatment will be discovered.”
First Christmas at house 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 suggest the top of his oncology therapy.
We’re nonetheless navigating the trail to search out our new “regular”.
Raf missed 15 months of college and nonetheless struggles with fatigue and mind fog. Chemotherapy has left him with vital 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 motive. 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 impression 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 Kids’s Hospital Basis’s Christmas Attraction. I imagine the significance of initiatives just like the Kids’s Hospital Basis’s Attraction 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 house and enterprise, misplaced household and mates through the course of, missed numerous milestones, and needed to begin once more.
However… we’re lucky sufficient to ALL be right here to do this, because of organisations just like the Basis and their supporters.
Kids’s Hospital Basis funds and runs in-hospital actions and help for hundreds of households annually however, importantly, in addition they fund life-changing analysis by means of institutes such because the Ian Frazer Centre for Kids’s Immunotherapy Analysis. With out this, our children wouldn’t be right here, and they’d definitely not have the chance to stay lengthy, joyful, and wholesome lives.
A $5 donation is all it takes
Christmas could also be over, however the most cancers struggle 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 aware of the monetary pressures dealing with everybody at the moment. I perceive the sentiment of many individuals that company sponsorships and Authorities funding ought to cowl well being and analysis.
However… I problem folks to evaluate this attitude for a second…
There are over 26 million Australians. Think about if even 1% of them determined to make a $5 or $10 donation quite 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, take into account 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 youngsters aren’t price $5.
This story was written by Natalie Oaten.
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