Good Friday Appeal: Warrnambool boy Xavier Grant’s family share heart-wrenching story
Six-year-old superhero fan Xavier Grant is on the mend after surviving heart surgery and a cardiac arrest and his parents say they will be forever grateful to the Royal Children’s Hospital for saving his life.
Good Friday Appeal
Don't miss out on the headlines from Good Friday Appeal. Followed categories will be added to My News.
After Xavier Grant made it through open heart surgery with flying colours, his family counted their blessings and took him home.
But three weeks later, Xavier was rushed back to the Royal Children’s Hospital, where he went into cardiac arrest on the operating table on his sixth birthday.
Now the Warrnambool family shares their heart-wrenching story.
Xavier was five months old when he was diagnosed with Kawasaki disease, which led to two dangerously large aneurisms forming on his left coronary artery.
Rodney and Hayley Grant spent the next 5½ years living on edge, fearing any big knock or fall could cause a potentially fatal ruptured aneurysm.
“Normally, your artery measures 4mm in diameter, and the large aneurysm was 13mm in size,” Mr Grant said.
Simple childhood pleasures became a minefield – trips to the local playground, playdates with friends, starting kinder.
In late January, Xavier had to have open heart surgery of a type that is rare in children, his cardiac surgeon Stephanie Perrier said.
“He had a blocked coronary artery, and I had to perform coronary artery bypass grafting, which is quite unusual for a six-year-old boy,” she said.
“Usually we do this operation for smoking adults or adults with cardiovascular risk.
“It was very straightforward and he was doing super well and just after a few days, he could be discharged. He was super strong and had a quite fast recovery.”
After returning home to Warrnambool, the superhero fanatic and his family were preparing for his first day of prep on February 12 with much excitement.
His school uniform was out ready.
The Grants had met with Xavier’s teachers.
Big sister Sienna, 9, was looking forward to having her little brother at school, Mrs Grant said.
“He was ready and roaring to go,” she said.
“He was just so excited, every plan was in place, the school had just gone above and beyond for Xavier.”
But just one day before, Xavier fell ill and his parents took him to his emergency.
Xavier had to be flown to the RCH, as the Grants tried to keep their emotions in check.
The next day, in what turned out to be the calm before the storm, doctors decided to drain the fluid off Xavier’s left lung.
“It was going to be an easy 40-minute procedure and maybe three days on the ward, and hopefully we’d be back home again,” Mr Grant said.
“We thought, ‘He’s just had open heart surgery three weeks ago. This will be a breeze, this little procedure.’”
Mr and Mrs Grant had a coffee in the hospital while waiting for Xavier to have his procedure, when Mrs Grant’s mobile phone rang.
“It was the surgeon, Stephanie, and she sounded very distressed, and she said, ‘Where are you?, and, ‘I need to see you straightaway’,” Mr Grant said.
“We’re like, ‘OK’, and she says, ‘Now!’”
The couple ran through the hospital to meet the surgeon just outside the operating theatre on the third floor, as Xavier lay metres away still under anaesthetic.
“I remember just seeing her very stressed and pacing, and the fellow looked like a deer caught in the headlights, and like he’d seen a ghost,” Mr Grant said.
What came next was every parent’s worst nightmare.
“Stephanie said, ‘We’ve just had a little bit of a minor complication; once I made the incision to put the drain in, he actually went into cardiac arrest,’” Mr Grant said.
“She said, ‘Once I made the incision there was that much fluid that came out of him, his pressure dropped instantly and we had to perform CPR for 30 seconds.’”
Mrs Grant said she could not believe what she was hearing.
“He’s just had open heart surgery, he’s just done the biggest thing of his life, eight hours, and he’s not cardiac arrested,” she said.
“How could his heart stop with something so minor, we thought at the time, compared to open heart surgery.
“We never in a million years thought she would have told us that.”
There was one more frightening piece of bad news – Xavier had developed a dangerous build-up of fluid around the heart that needed urgent removal.
“We just said, ‘Do what you’ve got to do – you’re the expert,” Mr Grant said.
Mrs Grant remembers sobbing and hyperventilating as she begged the surgeon to do whatever it took to save her boy’s life.
“I just said, ‘Bring back my cheeky boy. I don’t care what you have to do. Just bring him back to us,’” she said.
The next hour and a half were the “longest of our lives”, Mr Grant said.
But the surgery was a success and Xavier is now on the mend.
The family has since learned Xavier suffered a rare complication after his open heart surgery, which led to the terrifying experience.
Dr Perrier said while Xavier’s cardiac arrest was unexpected, it was a situation doctors were very experienced in handling.
She said the anaesthetist needed to perform a few compressions.
“We had to perform compressions, but it was very quick and he recovered very quickly,” she said.
“There was fluid around his heart that was impairing the good functioning of his heart. That’s why he arrested.
“So I had to insert a little tube in the pericardium, the space between the heart and the pocket that contains the heart, to drain that fluid, and once that was drained it was much better.”
“Superboy” Xavier finally arrived for his delayed first day of prep this week, and has quite the showstopper for show-and-tell should he ever need it.
Meanwhile, his parents are happy to put the heart-stopping episode – for everyone – behind them.
“What kid can say that on their birthday they were in ICU and cardiac arrested?” Mrs Grant said.
Xavier is one of the tens of thousands of Victorian kids who will benefit from this year’s expansion of the Good Friday Appeal’s funding to hospitals in the regions, including Warrnambool, so sick children can get world-class care close to home.
The Grants sometimes leave home in Warrnambool at 4.30am for an RCH appointment.
“For kids to have access to brilliant services like we have here at the RCH down home would be amazing,” Mrs Grant said.
The family will be forever grateful to the RCH for saving Xavier’s life.
“Xave wouldn’t be here if not for the quality of doctors like (cardiologist) Lucas (Eastaugh) and Stephanie,” she said.
“Until you’re there, you don’t realise how amazing that place is.
“For the Good Friday Appeal, that money is going to the best of the best.”
Dr Perrier said she was “completely amazed” by Xavier’s courage in facing up to his challenges.
“I think the future is bright for him,” she said.
“And I expect for him to live a normal, healthy life.”
MIA’S A ‘TOUGH LITTLE COOKIE’
After conquering two different cancers five years apart, there’s no stopping Mia Depuit now.
“She’s a really tough little cookie!” says Dr Molly Williams, Mia’s oncologist at the Royal Children’s Hospital.
The six-year-old Bluey fan from Shepparton is two weeks away from beating cancer for the second time.
Mia fought astronomical odds to survive stage four adrenal cortical carcinoma at age one.
Then she almost made it to the magical five-year cancer-free mark.
But Mia’s family was devastated when she was diagnosed with a second cancer last year – osteosarcoma.
Now after nearly nine months of chemotherapy, Mia is almost clear again.
“She’s a fighter, like 10 times a fighter,” proud mum Nicole Depuit says. “She’s coming out the other end. No one can believe it.”
Mia was first diagnosed with cancer after she tagged along with her mum to a GP.
“I couldn’t find a babysitter so I ended up taking her with me, and the GP noticed there was something wrong with Mia’s face and her tummy was quite bloated,” Mrs Depuit says.
“Luckily, I booked her ultrasound that afternoon – and they found a 10cm mass near the kidney.”
It was the beginning of an unfathomable chain of events for Mia and her family, who were living in the Whitsundays in Queensland.
“They found out the mass joined all the way up into her heart,” Mrs Depuit says.
“Then maybe three days later, she got put on life support because her blood clot just burst.
“They said, ‘She’s not going to make it, it’s stage four, it’s too late, you’ve got to get your families to come here to say goodbye.’”
Family members gathered to kiss goodbye a child who had been happy and healthy days earlier.
But then doctors threw the family a lifeline, suggesting chemotherapy was worth a try.
“So they started chemo straight away, while she was on life support, and she woke up and started breathing,” Mrs Depuit says.
“My mind was blown.”
Dr Williams says chunks of tumour clot had broken off in Mia’s heart and travelled into her lungs.
“She was very, very poorly and in a very dangerous way and just managed to claw her way back from that,” she says.
At that time, the Depuits moved to Melbourne to be closer to family support and the RCH.
Surgeons removed the tumour, Mia endured six months of chemo, and both parents had genetic testing.
It was discovered both Mia and her dad, Ben, have Li-Fraumeni syndrome, an inherited familial predisposition to a wide range of cancers.
In a further shock, a small slow-growing tumour was found in Mr Depuit’s brain, but its precarious location makes surgery too risky.
After six months of chemo, Mia was cancer-free.
The family moved to Shepparton just before Covid-19, and relished every moment together.
“Mia was able to go to daycare, kindy, make new friends,” Mrs Depuit says.
“Just living the normal life. Life was so perfect.”
Last year, the Depuits had Maisy, a little sister for Mia.
But two months later, a lump was spotted on a surveillance MRI just before the five-year remission mark.
“They called me and said, ‘There’s something on Mia’s shin’,” Mrs Depuit says.
Luckily, the cancer was detected early, and Mia had surgery in October.
“They cut out about 12cm of bone, then took out a part of the skinny bone the same length from the other leg and put that in,” Mrs Depuit says.
Mia will finish nine months of chemo in mid-April, and all indications are promising. “There’s no cancer at all, it’s amazing,” Mrs Depuit says.
Dr Williams, who has known Mia since she was a baby, describes her as “an extraordinary six-year-old”.
“She just gets on with it. She’s pretty outstanding.”
PINK’S SPECIAL MESSAGE TO KOBI
“I kicked cancer’s bum,” Kobi Dole says. And that’s no exaggeration.
The Bendigo boy has conquered a highly aggressive cancer after a shocking diagnosis of stage four Burkitt’s leukaemia six months ago.
The five-year-old woke up vomiting constantly on AFL grand final day after a week of unusual symptoms including sore teeth and lethargy.
Mum Casey took him to Bendigo Base Hospital, from where he was rushed by ambulance to the Royal Children’s Hospital the next day.
By that night, the family’s world was shattered when doctors at the RCH made the devastating diagnosis.
As Ms Dole says, “98 per cent of his body was full of cancer. Head to toe, full of cancer – in his bones, his pancreas, his liver, his colon and kidneys and lungs”.
“They told me, ‘Your child has cancer’ and it’s nothing any parent wants to hear.”
Another bombshell followed that night – Kobi had a 10.9cm tumour in his stomach.
“To be honest, I fell on the floor crying,” Ms Dole recalls. “I was a mess.”
Kobi became extremely ill from a dangerous complication of cancer treatment called tumour lysis and was put in an induced coma for seven days.
Ms Dole says the months since Kobi’s diagnosis have been a rollercoaster ride.
“He’s fought for his life in ICU,” she says. “He’s had a collapsed lung, he’s had pneumonia, he’s been under general anaesthetic at least 50 times. He’s had surgery so many times I’ve lost count. He has been here the whole time since grand final weekend. We haven’t left.”
Kobi’s RCH doctor, consultant oncologist Seong Lin Khaw, says Burkitt’s leukaemia is one of a few blood cancers considered an “oncological emergency” because it progresses so quickly.
“It’s a very rapidly growing tumour; it’s probably one of the most rapidly growing blood cancers,” Dr Khaw says.
“But also that rapid growth, I guess, makes it also sensitive to chemotherapy, which is designed to kill growing cells.”
Kobi had his last chemotherapy on March 11.
Later that same day, American pop star Pink dropped by with her daughter Willow to visit Kobi and other cancer patients and sing for them.
Pink scrawled a congratulatory message on a sign Ms Dole and Kobi made.
It read: “My last day of chemo! Chemo was tough! But I was tougher!”
“It was a very emotional day,” Ms Dole says. “There wasn’t a dry eye in the room.”
Ms Dole is thrilled the Good Friday Appeal’s funding will this year for the first time be shared with regional hospitals, including Bendigo, so kids can receive world-class care close to home.
“I think that’s amazing,” she says. “You don’t have to worry about driving two hours, it’s only 10 minutes around the corner and you know that your child is still in safe hands.
“Knowing that your child is going to get the same great care you would get if you came down to Melbourne is remarkable.”
When doctors told Kobi and his mum the cancer had gone, both burst into tears.
“He said, ‘Can I go home?’” Ms Dole says.
“I said, ‘Yep!’ And he said, ‘I kicked cancer’s a--e!’
“And I said, ‘Yes, you did!’ ”
After almost six months living at the RCH and battling for his life countless times, Kobi understands how big a deal it is to be in remission.
“Cancer’s out of my bones!” he says. “I’m proud of myself.”
Kobi can’t wait to get back home and ride his bike with his brother Darcy, 7, and play with his sister, McKenzie, 11.
The family has been planning the next momentous event in Kobi’s life – ringing the bells.
It’s a special event at the RCH to celebrate every time a patient is in remission.
“He’s now in remission and cancer free,” Ms Dole says. “And he’s very, very excited to ring the bell – and run like hell.”
Support: goodfridayappeal.com.au
Appeal record broken as donations top $23m
The Good Friday Appeal has come to a close for 2024, with a record-breaking $23,368,724 raised for the Royal Children’s Hospital. Recap the day here.
Lee’s new deal for Good Friday appeal
Lee Kernaghan is known for his charity work — and he’s found a new way to raise funds for Victoria’s Royal Children’s Hospital.