FOR the Manning family, Christmas last year signified the beginning of a fierce health battle for their youngest son, Waylon, with the 10-year-old diagnosed with a rare cancer unresponsive to treatment – until the family entered him into an international medical trial with no idea how successful it would be.
Last year, two weeks before Christmas, Broken Hill local and Waylon’s mother Rachel Manning, who now resides in Mildura with her husband Matt, found a small lump protruding from her son’s back.
“Rachel noticed a little lump on his back, under his shoulder – it looked just like a mozzy bite,” Mr Manning said.
The parents were instructed to wait a couple of days and see if the swelling reduced, with their doctor thinking the lump was a swollen lymph node following a virus.
“Couple of days later it was as big as a golf ball, so we tried to get to the doctor but it was an eight day wait to see a doctor in Mildura so we were ringing everyday to get an appointment,” Mr Manning said.
“So by the time we got to see the doctor, which was day eight, this thing was as big as an orange under his arm.
“It just grew so rapidly, and we’re all sitting there scratching our heads thinking what can we do?”
Scans followed, revealing that Waylon had a rare and aggressive bone and soft tissue cancer called Rhabdomyosarcoma, nicknamed Larry the Lump by the ever-positive family.
“By the time we got to the Royal Children’s Hospital in Melbourne, it was day 14 and this thing was like a rock melon out the side of his arm, out the side of his back and around his shoulder,” Mr Manning said.
“It is a very rare type of muscle and bone cancer, and he’s got both.
“But the rarest part is that there’s two tumors and they’re both encapsulated inside each other; the doctor said that’s very rare.
“Rhabdomyosarcoma is fairly rare anyway.
“There’s only a handful of cases in Australia – I think there were around nine in the UK – so we were fast-tracked to have a lot of tests.”
This isn’t Waylon’s first health issue – he was born with unilateral renal agenesis – which means he only had one kidney at birth – but it is the most serious.
“To hear the words come out of your mouth of your 10-year-old son that he’s got cancer; I’ll tell you what, that’ll nearly kill you,” Mr Manning said.
“That was probably the hardest thing I think we’ve come across.
“Everything was like in slow motion for about three weeks and then we sort of got to come up and take a breath of air.
“That’s what it felt like; the whole world’s just spinning, and you’ve got to do what you’ve got to do.”
Waylon’s first round of chemotherapy was not successful, leaving the family with two options.
“We were basically told, ‘we’re not sure what to do’ by doctors,” Mr Manning said.
“Go home and enjoy what time you’ve got left, or if there’s a possible trial he qualifies for, we can put him in that.”
Waylon was accepted into an international study based in Switzerland, Germany, UK, America and Australia, practised in the Royal Children’s Hospital in Melbourne and beginning just before Christmas.
“It’s a worldwide study and he has reacted extremely well to that,” Mr Manning said.
“He’s gone from a 10 per cent chance of full recovery to a 70 per cent chance of full recovery.
“It’s still ongoing and all this chemotherapy is trial based, so we have to travel to Melbourne weekly to have chemotherapy, radiation, scans, doctor’s appointments.
“We’re just hoping that it shrinks the tumor a bit more to hopefully have it removed.
“It’s all by ear; he’s in the hands of the specialists at the moment.”
The family isn’t out of the woods yet, as they start to feel the financial burden of constant travel and time off work.
Mr Manning is a truck driver but lost his full time job in recent months due to lack of hours and now works casually, and his wife, who works for a pathology company as a phlebotomist, is on unpaid leave to allow her to travel with Waylon for his treatment in Melbourne, six hours from their home.
Alongside the costs of being a family of six, extra travel costs and accommodation, the family do not know if the treatment will be covered by Medicare, which led to Waylon’s aunt Louise Turvey creating a GoFundMe to help support the family, which has over $3000 banked already.
“We’re waiting to see if any extra costs come out of the trial, but at the moment the main cost is getting back and forth from Melbourne, day to day living,” Mr Manning said.
“Just how it is at the moment.”
Mr Manning also said it has been hard to ask for help.
“We’ve had pretty good support from family and some close friends,” he said.
“It’s a pretty big thing for us. We’re fairly private, we don’t really share a lot of our stuff.
“We generally stick to ourselves and never really stick our hand out for help, you know?
“We’ll just head down, keep working. We’ll battle our way through it, but this time it’s all a bit different.”
Mr Manning said that there’s been two charities in particular, Sunraysia Cancer Resources and CHAILIS (Children Having An Illness Living In Sunraysia) that he can’t thank enough.
“I would be buggered without those two charities, I would be absolutely skint. I would be completely broke and have nowhere to live,” he said.
“It’s basically the be all and end all of it because without them we wouldn’t have survived.
“That sort of support is unbelievable.”
As for the man of the hour, Mr Manning said Waylon’s mood varies, but he is ultimately doing well.
“He’s had days where he’s had to lay in bed because he’s just physically sick and can’t move, and other days he’s been great,” he said.
“He’s had a couple of days where he’s been able to go back to school and catch up with friends. It’s up and down depending on the cycle and part of the trial.”
To find Waylon’s GoFundMe, search Help 10 year Old Fighting Cancer to find the fundraiser created by Louise Turvey.
