The brave faces of the Good Friday Appeal
His happy nature was captured in a beach photo three months before little Fletcher Kruk underwent lumbar punctures, chemotherapies, and intravenous lines. But his family says his spirit shines through.
Victoria
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Each hurdle baby Luca Polidano faced seemed insurmountable.
Over six weeks – from 31 weeks gestation when the first abnormality was detected, through to his second week in the outside world when he underwent life saving surgery – Nadia and Joe Polidano rode a rollercoaster of doomsday scenarios for their son.
They were initially told to prepare for losing their baby before birth after scans suggested he had the rare abdominal birth defect.
When further scans suggested a more complex problem, they braced for taking home a seriously ill child who faced surgery and a devastating syndrome.
But Luca remained a boy who was put together with puzzle pieces collected from different boxes.
There was something unusual about his fragility and the position of his major organs that doctors couldn’t quite work out before birth, given the limitations of scans in utero.
And yet even when Luca’s true diagnosis was revealed to Royal Children’s Hospital surgeons when they could first peek into the newborn’s chest, there would be no guarantees for the Oak Park couple that their premature son would make it through the operation needed to save his life.
“Our hearts stopped that day we got that first bad news,” said Nadia.
“Now four months later, with our boy home, we wish we could have known it would all work out.
“Everyone kept telling us if he makes it to the Children’s Hospital, he’s probably going to make it.
“We’re so grateful to the hospital for making this wish come true.”
Luca was in a bad way when he was born, with his heart working overtime.
After being transferred to the RCH after straight after birth, Luca was wheeled into theatre on day six of life for a two-part investigative surgery with renowned neonatal surgeon Joe Crameri.
It was discovered a huge tumour, a teratoma, had burrowed through the back of Luca’s diaphragm and was taking up two thirds of the abdomen and chest cavity.
This mass had disturbed all the developing organs around it – the heart, lungs and major blood vessels in the liver.
Mr Crameri had never seen this type of tumour of this size and in this unusual spot.
The ideal situation was to wait until Luca was four weeks old for the surgery, but at two and a half weeks, it was getting harder and harder to support his stressed lungs and heart.
“We knew we had to take the risk and get this out now, otherwise we may be in a position where he wasn’t strong enough at all to tolerate the operation,” said Mr Crameri.
Over eight hours, Mr Crameri and paediatric surgeon Michael Nightingale moved all the major organs out of the way to meticulously resect the tumour.
The operating theatre erupted into applause when the 200g benign mass was removed all in one lump.
“As much is was the worst day of our life, we say it was one of the best days as well,” Nadia said.
“There were so many obstacles and hurdles that had to be overcome, but he made it through. Our boy was tumour free.”
After almost 10 weeks at the RCH, the Polidanos are soaking up the simple joys of having their precious boy home.
“In saving Luca’s life they’ve saved our lives, because we were just going to be broken without him.”
A moment in time
They can be emotional photos to look at.
In just a few short months, the physical effects of cancer treatments can start to be seen in Victoria’s youngest cancer patients.
But the parents of these three children being treated for blood cancer at the Royal Children’s Hospital say photos of their kids taken not long before diagnosis, are also helping them keep their eye on the prize; inspiring daydreams and conversations about what life after the Big C will mean for their family.
Fletcher Kruk runs along the Torquay beach, it is clear this blond-haired spunk has not a care in the world.
But just a week later in late January, the four-year-old would quickly became lethargic and pale. Next came the bruises.
Fletcher ended that week with a limp that saw him stop walking.
The next day came the diagnosis of Acute lymphoblastic leukaemia; an abrupt full stop to a joyous family holiday.
After almost three months since being thrust into the world of lumbar punctures, chemotherapies, and intravenous lines, it is hard for mum Georgia Reid to appreciate what her youngest son has been through until she looks at this beach happy snap.
“When they say it’s an intensive six weeks of initial treatment, it is,” Ms Reid said.
“Yes, I knew he had lost his hair and was a bit puffier, but you look at that photo and see there is a significant change.
“You’re living in that oncology bubble an all the kids are the same. It’s not until you step out that you see he’s experienced a lot and endured a lot in such a short amount of time.
“But it’s really heartwarming that his personality and cheekiness are still there.”
No choice but for her to get through this
When Zara Nguyen’s parents look at photos of their daughter from just last year, one emotion stings every time.
“We miss her,” said dad Tom.
“That’s all I can think about. A lot of kids in hospital mature really quick. They go through a lot of tough times, so they look older than they are supposed to be.”
The four-year-old is almost five months into treatment for acute myeloid leukaemia.
The disease has already taken most of her hair and thinned her eyebrows.
Surgery to remove and store ovarian tissue is aiming to ensure Zara is also not robbed of her future fertility, which can be affected by the intense chemotherapy.
Her path to diagnosis started in November last year, when an itchy rash of red dots appeared.
Tom had bought Zara and her eight-year-old sister a scooter each to occupy them during Covid lockdown, but over a month his “very vibrant, very strong” child started having trouble breathing.
She became very tired very quickly and lost interest in riding.
“When people say your life flashes before you, when we got the diagnosis of leukaemia all the memories of Zara were flashing before me,” he said.
Tom said one of the hardest parts of treatment was being unable to protect his daughter from fear and pain.
“If someone comes up in the playground and hurts your child, the first thing they do is look around at you for protection,” he said.
“In the hospital she doesn’t understand about putting a needle in, which really hurts her.
“She’ll look at me and my wife like ‘Why aren’t you helping me?’.
“She didn’t trust us for a long time. She’d lash out at us.
“For a parent, it’s been heart wrenching but now we’re further along she understands now that we have to do things.”
With another round of chemotherapy and a stem cell transplant ahead, Mr Nguyen said his family prided themselves on their optimism.
“We always think and talk about life after cancer, because that’s the positive side to it. There is no room in our minds for her to not get through this,” he said..
“She’ll be immune-compromised for at least a year and a half after treatment, but the first thing we want to do is go back to Vietnam.
“But the biggest thing for me will be watching her go back on that scooter. Then I’ll know she’s OK.”
Light at the end of the tunnel for Novalie
At just eight years old, Novalie Morris has mastered the art of working on a positive mindset. With her trademark rainbow knee-high socks and stylish headbands, she likes to dress for the day she hopes she will have on the Kookaburra ward.
After getting through more than two years of intensive leukaemia treatment Novalie took out her chalk and started writing positive affirmations on her local footpaths.
“If today is bad you will always have tomorrow,” one quote read.
On the day she progressed to hand printing these inspiring quotes on signs and hanging them around her Geelong neighbourhood, her mum Kathleen got the call from Royal Children’s Hospital doctors that the cancer had returned.
“Telling her was the hardest thing,” Kathleen said. “It was like being at the finish line of a marathon and someone says go back and do it again. It’s unfathomable.”
One way her mum helps give her a mental boost is to poster her hospital room with photos of friends, family and happy times to remind her daughter of what is still ahead.
There is one special photo, of a pigtailed five-year-old posing in her sparkly costume for her dancing concert, taken about six months before cancer entered their world in May 2019.
“It’s mixed feelings looking at that photo,” said Kathleen.
“She had her whole life in front of her, but she only got to second term of school before she was diagnosed.
“She was just a lover of life – keen for school, dancing, swimming and socialising – but so much was taken away with the cancer diagnosis.
“We try and remind her about what’s to look forward to with life after cancer.
“There is light at the end of the tunnel.”
Whole Lottie hospital love
The odds were stacked against little Lottie before she even drew her first breath.
Diagnosed with congenital diaphragmatic hernia (CDH) at her 16-week scan, doctors told Caitlyn Browne and Dylan McKnoulty their baby had a “40-45 per cent chance” of surviving after birth.
Her diaphragm — a muscle separating the chest and abdominal cavity — hadn’t formed properly meaning vital organs including her heart and stomach were in the wrong place, placing pressure on her lungs.
The first-time mum relocated from Albury-Wodonga to Melbourne four weeks before her due date so she could be near the Royal Children’s Hospital, and gave birth five days later on January 15.
After a “ten-second cuddle” she was whisked away and placed on a ventilator, where she would remain for eight weeks.
That night she was moved to the Royal Children’s Hospital and Lottie Browne-McKnoulty and her medical team’s fight against the odds began.
She overcame two surgeries to move her organs after the first surgery was halted when she went into cardiac arrest, just six-days-old.
A week later she underwent a second successful surgery and then battled sepsis and a partial collapsed lungs.
But baby Lottie didn’t care about the grim odds, and months later her mum couldn’t hide her excitement as she updated the Herald Sun on her daughter’s “nice big step”.
Lottie was breathing on her own for the very first time.
Having had her daughter’s life saved by the Royal Children’s Hospital, Caitlyn’s wish for Lottie’s future is simple.
“I just want her to be a happy little kid,” she said.
Racing to recovery
Adult eyes were diverted for only a moment, and that’s all it took for Joseph Kitete to reach towards the coffee table and pull a mug of tea over himself.
The 15-month-old suffered burns to 13 per cent of his body – from head to stomach – in the accident four weeks ago, needing multiple skin grafts.
While paramedics put the toddler in the bath to cool his burns, RCH trauma doctors say many Victorian families are missing this vital first step, which can have major implications for how burns heal long term.
Burns surgeon and director of the RCH trauma service Warwick Teague said burns needed to be cooled with running water for 20 minutes, even before rushing to hospital, to stop further damage.
“Cooling prevents the burn injury that has already happened from becoming larger and deeper,” Dr Teague said.
“The pain, depth of the burn, the likelihood of skin grafts or being left with a scar that interrupts your future; all of these things – which can still occur after first aid – you have the opportunity to limit with cooling.”
Joseph’s mum Esther Bahatie said that from security guards to the surgeons, she had been blessed by tender care at the RCH.
“I couldn’t have wanted to be anywhere else but The Royal Children’s Hospital,” she said. “I just want him now to be a kid again.”
Willow’s a first
Willow Lawton does not understand what cancer is, only that it has taken away her “baby hair”.
And a rainbow-shaped scar on her abdomen is the reason why the three-year-old can spend a month at a time confined to her hospital room, away from her two beloved older brothers.
She knows “a tumour” is the reason for a medicine-feeding tube taped to her cheek, going into her nose.
Only later may she appreciate that a crack team of oncologists – the brightest minds in Victoria, another network of Australian specialists, and experts from the US – are working to find the right combination of treatment to overcome the neuroblastoma that continues to invade her tiny bones.
Willow is the first child at The Royal Children’s Hospital to be signed up to an international trial testing a new combination treatment – a different kind of chemotherapy and an immunotherapy – and a promising medication called DFMO.
The drug, difluoromethylornithine, aims to starve the neuroblastoma cells, restricting their growth and spread.
Mum Kirsty Whitbread and Willow make the most of each day and each hospital stay. They wheel in a trolley for each hospital admission that contains matching quilts, fairy lights, musical instruments and supplies to create an instant art gallery behind her bed for the crafty creations she makes while room-bound.
Willow has just started kindergarten on the ward, and is relishing the chance to do music and art therapy now that Covid restrictions have eased – all part of the RCH’s mantra about treating the whole child, not just focusing on medical treatment.
“I just want them to find the individualised treatment that works for Willow so her disease stabilises and we can start to get rid of it,” Ms Whitbread said.
“She’s gone from this healthy, bubbly, social child to now being so removed from all other kids.
“I can’t even take her to the supermarket because she’s so immune suppressed. She deserves the chance to be a normal kid.”
Amelia the brave
It’s a simple happy snap in the daycare playground. A three-year looks straight into the camera lens; her eyes crinkled with excitement.
Amelia’s perfectly white toddler teeth peek out from a wide, full-cheeked smile. Her waist-length brown hair has been tamed into two neat plaits. Perched atop play equipment, it is the epitome of childhood live-in-the-moment happiness.
But for the Nesci family, the photograph is so much more. It captures a moment in time, after which nothing would ever be the same.
Following this photo, Amelia suffered a month-long health deterioration and merry-go-round of doctors’ visits. What started as a suspected lingering daycare cold, ended 25 days later with her being carried — passed out — into the emergency department of the Royal Children’s Hospital.
She was then diagnosed with acute lymphoblastic leukaemia.
But instead of being a heartbreaking photo of good times and what might have been for parents Nadia and Anthony, the image of their daughter and second youngest child has instead been transformed into a positive project – a children’s book called Amelia the Brave.
This cartoon alter-ego has one mission; to give a child-friendly and gentle look into the world of childhood leukaemia.
Nadia’s original idea was to write a book and print one copy at Officeworks to help explain to Amelia’s daycare and kindergarten friends why she had suddenly disappeared.
More than 500 copies and a second print run later, alongside the family’s fundraising efforts, will see them soon top $20,000 in donations to the Good Friday Appeal.
Amelia the Brave is not only spreading awareness that each day more than two Australian children will be diagnosed with cancer, it is also empowering Amelia to step up to a super hero role.
“When she was crying in those early days and asking; ‘Why me?’ All we kept telling her was; ‘You’re so brave, baby.’ It just stuck,” said Anthony.
“With each hospital visit and each time she finishes her medicine, I think she believes the brave part now.
“Just with her demeanour and the way she carries herself, especially in the hospital now, she knows what’s expected, what’s going to hurt and what isn’t going to hurt.
“For her, at age four, to go ahead and do it the way she’s doing it, she is our hero.”
A big driver for the couple’s fundraising and awareness raising is to see paediatric cancer treatments improve so they can be more effective and less toxic on little bodies.
“So much more needs to be done for childhood cancer,” she said.
“There are significant after-effects of chemo. Amelia will need yearly heart scans until she’s 21. She’s only four.
“Even though her treatment ends next year in August, we’ve got years of things ahead of us.”
For Nadia, cancer has confirmed to her what is important in life.
What they’ve been through in the past year has also reinvigorated their drive to give back to the place that is treating their daughter.
“We’re doing this (telling our story) because the Royal Children’s Hospital saved my daughter. It’s as simple as that,” she said.
“The amount of the kids we’ve met now that they have saved, and continue to save every day, we owe that hospital everything – everything.”
Milla doesn’t think twice with three legs
There is a towering tree at Milla Gooch’s kindergarten that is named after her.
Each year when a new group of children begin, daunted by what they can achieve, teachers tell them the story of their star bush kinder graduate who – with a prosthetic leg – has been one of the only ones to climb this giant tree. If Milla can do it, so can they, the kids are told.
“Everywhere we go people are just amazed by her, but I see it every day so sometimes I have to step back and reflect that she’s so independent, happy and confident,” mum Brooke said.
It was a daunting decision to follow the advice of Royal Children’s Hospital orthopaedic surgeons and have their 11-month-old daughter’s right leg amputated after she was born without a shin bone and ankle.
Doctors assured Brooke and husband Shane that despite this rare ¬congenital abnormality called tibial hemimelia, they would be amazed at what their daughter would achieve with a prosthetic leg. And they were not wrong.
Milla, now aged 8 and a frequent flyer at the RCH for regular check-ups to keep her body strong, has recently been fitted with three new legs. She now has her first waterproof swimming leg, an athletic blade and an upgraded everyday leg.
“It’s changed her pace so she can keep up with the other kids,” Ms Gooch said. “She’s riding a bike, she has started soccer and participating in the school cross country … She doesn’t think twice about it. She just has a go.”
Caleb’s RCH high five
As the adults hurried about their chores just before dinner, Caleb Sinaga had his eye on his next plaything.
The 11-month-old was a speedy crawler, and had mastered hoisting himself into standing position by pulling himself up on the couch or table.
So when a freshly made cup of tea was sitting in reach on the coffee table, he had poured it over himself before anyone could intervene.
“Initially Caleb wasn’t too close to the tea. But everyone is busy, it’s the end of the day, everyone is rushing around. We weren’t looking and when you look he’s already grabbing the cup of hot tea,” said mum Ramona Attamimi.
“I rushed to run water over it,” she said.
“My mother-in-law, who was there, brought some ointment to put on it.
“It was red by then. I didn’t know what to do with burns. I’d never had them before. I didn’t know how severe it was.
“I called the maternal child health nurse. They said because it’s on his face and he’s a baby, it’s better to bring him to ED.”
After taking him to their local hospital, they were transferred to The Royal Children’s Hospital for ongoing outpatient care for the second degree burns.
Specialist nurses and plastic surgeons work with each child until the wounds have sufficiently healed, ahead of physiotherapists managing their longer term care – usually over months or years – to reduce the scarring and improve movement as much as possible.
Ayla on road to health after nine-hour brain surgery
It took nine months of riding a merry-go-round of recurrent sickness and visits to doctors before the sinister secret growing at the back of Ayla Topcubasi’s brain was finally revealed.
Regular ear infections and soaring temperatures that dominated the first half of last year for Ayla were put down to the most obvious culprit – starting at childcare.
In the six months since her brain tumour was discovered, the 2½-year-old has undergone two brain surgeries, 30 doses of radiation and three rounds of chemotherapy.
Each time a test or procedure is performed, The Royal Children’s Hospital staff first carry it out on her best friend, stuffed toy Puppy.
“It’s like they’re sharing what they’re going through together,” mum Meltem Kirca said.
“Even with her little language, she knows why she’s in hospital. We talk through everything as we go.”
By September, after yet another course of antibiotics had not worked, Ms Kirca took her daughter straight to the RCH emergency department.
The doctor asked Ms Kirca if her daughter could look into the light. Ayla could not. This was a vital clue. Something serious was going on.
Over the next two days, Ayla passed every test doctors put her through.
But when a nasal gastric feeding tube could not help her keep nutrients down, she was taken for an MRI scan.
The scan found a tumour, an ependymoma, growing at the base of her brain.
It was blocking the cerebral spinal fluid – the clear liquid that bathes the brain and spinal cord – from leaving her skull.
“I was in shock, I couldn’t even move,” Ms Kirca said.
“That day was the worst day in my life.”
Ayla was wheeled straight into theatre for emergency surgery to drain the fluid building up in her brain.
Two days later, neurosurgeon Wirginia Maixner performed a nine-hour operation to remove the 3cm tumour.
With one round of chemotherapy to go, Ms Kirca said she had “big hopes” for her youngest daughter.
“The doctors are telling us that it’s looking very good,” she said.
“I just don’t want this to come back to her again. If you’ve got health, you don’t need anything else.”
Aliyana is a blooming marvel
It has taken daily watering and hard work, but the tiny seeds of positivity and hope that Aliyana Mimmo and her family have planted are blooming.
Almost a year after being diagnosed with T-cell acute lymphoblastic leukaemia, and about to finish the most intensive treatment, the 10-year-old hopes to start ticking things off her ever-growing “after cancer to-do list”.
Dinner at a restaurant, a trip to a water park and a weekend away with her mother D’Anna are first.
One thing the pair feel they have control over is their attitude each day.
“We feel what we need to feel, when we need to feel it,” Ms Mimmo said.
“She has every right to cry, scream and get angry – and we have those moments. Then I say tomorrow is a new day. We just make fun of everything and take every opportunity to have a joke, a laugh or a dance.”
While the rest of her family recovered from a virus last May, Aliyana’s cough persisted for weeks.
A trip to the Royal Children’s Hospital emergency department revealed it was a result of cancer cells clumping together to block her airway.
“I couldn’t go in and look at her for an hour after the doctors told me, because she looked so well,” Ms Mimmo said.
“And yet they were telling me we’d be moved to ICU that day and we were starting chemo that afternoon.”
While her parents were upfront about her leukaemia diagnosis and what lay ahead with treatment, children this age can Google and it was Aliyana who told her parents that she had cancer.
“She’s non-stop with questions. She’s asked me: ‘Is what I have terminal? And what would have happened if you hadn’t taken me to the hospital that day?’”
After about 110 nights in hospital over the past year – many of them unexpected admissions for temperate spikes or low platelet counts – next week she finishes one of the extreme phases of treatment.
Then, after a two-month break, Aliyana will start the final 18 months of maintenance chemotherapy – a comparatively lower-dose course during which her hair will regrow and allow her to return to school.
Why the RCH is Demon’s saving grace
Melbourne premiership forward Ben Brown has seen first hand why it’s so important to support the Good Friday Appeal.
His teenage cousin Grace has been in and out of The Royal Children’s Hospital since being diagnosed with leukaemia at age 6.
“The worst thing you can imagine is your child being sick and needing the hospital,’’ Brown said.
“My cousin Grace, she has Down syndrome and was diagnosed with leukaemia at age 6. Initially she was given three weeks to live, and she’s now 15. She’s been in and out of the Children’s her whole life so my uncle and his family have spent a lot of time there. We’re very much aware of the great job they do.”
Victorians are being urged to dig deep as the appeal sets out to reach the $400m milestone.
After a difficult two years, popular events the Kids Day Out and the Herald Sun Run for the Kids are returning.
Appeal ambassador Brown and wife Hester hope their children Aila, 3, and Esme, 1, never have to become familiar with the world-class facility at RCH.
“I’ve heard countless stories of how the doctors have been able to prevent serious things happening to kids who are the most vulnerable,” he said. “It was a no-brainer to get on board; we want our kids to be safe and healthy.”
Duo battles back, thanks to you all
Their stories started from the same script.
A happy, million-miles-an-hour toddler quickly turned into a grisly and super-tired child, who soon refused to walk.
After months riding a merry-go-round of doctors’ visits, antibiotics and tests, it was inevitably a single blood test that confirmed a blood cancer had taken over their tiny bodies.
While Alex Wyatt and Isla Magann are both in remission from acute lymphoblastic leukaemia, their stories quickly headed in different directions, and they are now at opposite ends of the cancer treatment spectrum.
They are the joint faces of this year’s Good Friday Appeal, which in its 91st year has raised almost $400m to ensure Melbourne’s Royal Children’s Hospital patients receive the world’s best care.
Three-year-old Alex is almost a year into treatment, and has another 2½ years ahead.
Gabby Wyatt clearly remember feeling physically sick at the shock of her son’s diagnosis last June. He started chemotherapy two days later.
“There is a sense of grief. Prognosis aside, you know pretty early on he’s looking at two or three years of treatment,” she said.
“You think: gosh, is this going to be his whole childhood? How much of this will he remember? How much will this set him back in his development? For people who are freshly diagnosed, I say it gets better.”
Eight-year-old Isla has spent more than half her life fighting cancer, and has undergone everything in the anti-cancer arsenal after leukaemia returned twice.
She was diagnosed when she was three, and while her cancer quickly retreated into remission through chemotherapy, it returned aggressively three years later.
After more chemotherapy didn’t work, she was offered a revolutionary new treatment called CAR T cell therapy. It involves reprogramming a patient’s immune cells so they can see and attack the once “invisible” cancer.
And while that worked for 100 days, the cancer came back. More intense chemotherapy gave her a final chance, allowing her to receive a bone-marrow transplant in July last year.
Her mum Leanne Magann said: “A lot of people ask me how have you done it. When I look back, I don’t know. When you’re in the middle of it, you just do it. You’d do anything for your baby.”
Both families – among the 200 Australian households who will get this heartbreaking diagnosis for their child this year – have come to learn a cancer diagnosis is a thunderbolt for the whole family.
Good Friday Appeal | Meet AlexThree-year-old Alex is almost a year into treatment, and has another 2½ years ahead. This is his story.
Cancer means job resignations or exhausting banks of sick leave. It means living day-to-day on borrowed favours and goodwill from friends and family; who fill the fridge, care for siblings, walk the dog and help pay for bills.
Cancer sees young children thrust into a new world where the names of complicated medications and hospital equipment quickly roll off their tongues, despite them not yet knowing the alphabet.
Cancer is often understood by Victoria’s smallest patients in terms of a cartoon battle between the “bad guy” cancer cells and the “superhero” medicine, with lucky dips and visits from music therapists rewards for needles, lumbar punctures and nauseous-inducing drugs.
Good Friday Appeal executive director Rebecca Cowan said money raised through this year’s appeal would go towards research, education and medical equipment. One such program to benefit will be the CARE (4 Kids) program, which will help provide comprehensive care to oncology patients, including supporting mental health, educational and psychosocial needs.
“It is thanks to all of our generous fundraisers, partners and the wider Victorian community for continuing to donate and support the appeal during challenging times to ensure children like Alex and Isla are able to receive world-class care at The Royal Children’s Hospital,” Ms Cowan said.
Alex’s mum Gabby has relieved heavily on her son’s paediatric oncologist, Diane Hanna, to be their beacon of hope. She’s not quite ready yet to let herself day dream about the future.
But now Isla has been through every treatment possibility – some twice – and her daughter is still six months in the clear, Leanne has started planning for life after the big C.
“I just picture us happy, going on holidays, her growing up, getting married, everything,” she said.
“She always makes the comment ‘Am I the unluckiest kid?’ I tell her; actually Isla you’re one of the lucky ones. We are so blessed that she is here, and the hospital has given us that.”
Donate now at goodfridayappeal.com.au
Originally published as The brave faces of the Good Friday Appeal
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