When Naomi and Aaron think about their baby girl, they remember her bright spirit, contagious laugh and most of all, her beautiful smile.
Tragically, it was little Lola’s smile that would be the first subtle sign that something was very wrong – before she sadly passed away a few months later.
Back in 2021, the adorable ‘chubby cheeked’ infant was a thriving and healthy baby who was hitting all her milestones.
Her arrival into the world made the Ross family complete, with Naomi and Aaron delighted that their older children Toby, 11, and Maya, seven, had a little sister.
But when she was 10 months old, doctors revealed the earth-shattering news that no parent should ever have to hear.
Lola had cancer.
“Lola was such a happy and smiley little baby, we just adored her,” Naomi, from Kellyville, NSW, told news.com.au.
“We never imagined anything like this could ever happen to us.”
“The first thing we noticed was that she had been vomiting a little, but we put it down to just being a daycare bug and we didn’t think too much of it.”
“We’d been to the GP about it, but nobody was too worried.”
“One thing we had noticed, but also didn’t think too much about was that she had a little bit of a crooked smile.”
“We kind of made little jokes about it and laughed, but we didn’t put it down to being anything sinister.
“There was one day she just looked unwell and a bit blank. I knew in my stomach something was not right, so we took her to the hospital.
“Another thing is we noticed she began using her right arm more than her left. We thought this was odd.”
‘Something wasn’t right’
Doctors noticed Lola’s crooked smile and paired with the fact she was no longer using her left arm much, they decided to run some different tests to find out what was going on.
“We were scared. We didn’t know what was going to happen,” Aaron said.
“We just had a feeling that something wasn’t right when the doctors and nurses were talking behind a window and were taking a while to come out.
“By this point it was quite late at night and then a whole team of doctors entered the room. We knew then it wasn’t good.
“Then they simply told us ‘we found something’. Our hearts sank.”
With just those three little words, their entire world came crashing down.
A CT scan showed a dark mass on Lola’s brain. The very next morning, she was rushed into an operating room.
Devastating diagnosis
After a grueling eight hours of pacing the hospital halls, Naomi and Aaron were given the shocking news.
Surgeons had found a brain tumor the size of a mandarin from their baby daughter’s brain.
“That was one of the hardest things, passing her over to the surgeons to cut her open,” Aaron said.
“We were sick with worry for those eight hours. When they came back out they said they had removed what they could.
“It was really confronting seeing her after the surgery. She had tubes everywhere.
“But we were just so thankful she was alive.”
A biopsy determined Lola’s diagnosis: she had an embryonal tumor with multilayered rosettes (ETMR).
It is a very rare and aggressive brain cancer that has a very high chance of regrowth with no targeted treatment protocol.
She underwent three rounds of high-dose chemotherapy which started just before her first birthday.
But sadly, a follow up scan revealed some terrible news.
There was residual cancer on her brain, meaning she would need a second operation, more chemotherapy and more radiation.
Lola underwent her final treatment of radiation on Christmas Eve and then went home to celebrate what would sadly be her last ever Christmas.
‘We tried everything’
Over the next month, the family spent time together making precious summertime memories that would last a lifetime.
On February 2, Lola went in for an MRI. That afternoon, the oncologist called to tell them that, although the official radiologist report had not yet come through, he did not like what he was seeing.
Over the next two weeks, the parents were given the worst news imaginable.
There was nothing more they could do.
“That was the gut-wrenching moment we realised that the worst could happen,” Naomi said.
“It took a couple of weeks, but we eventually were told that there were no more treatments available.
“They had tried everything and it wasn’t working. There was nothing more we could do.
“We knew it was the beginning of the end.”
While they did not know exactly how long Lola had left – doctors said it could have been up to six months – in the end, she only lived for another six weeks.
Her last day on earth was peaceful.
“We didn’t wake up knowing it was the last day,” Naomi said.
“But she deteriorated quickly. She wasn’t really responding and her breathing was laboured.
“Our nurse agreed it was only a matter of hours.
“All of us sat on our bed together and cuddled. We sang some songs and talked to her.
“She was surrounded by love.”
Lola passed away peacefully at home on March 26, 2022.
Making a difference
Her family is sharing her story to help keep her memory alive and raise awareness of childhood cancer, specially ETMR.
They honor Lola in small ways every day by talking about her and speaking her name. Each Christmas, they have a stocking with Lola’s name on it.
Since her passing, Naomi and Aaron have gone on to have another baby girl named Edie, now aged one.
“Keeping Lola’s spirit and name alive is a big part of our healing,” Aaron said.
“We’ve got her stocking up for Christmas. We’ve taken ornaments out to her grave and decorated it for Christmas.
“At our Santa photo, we have a photo of her with us so she is included.
“We just try to do the best we can and keep her close.”
Recently, Naomi and Aaron attended a talk at Children’s Cancer Institute, where they were inspired to hear about the progress being made in childhood cancer research.
“We’re just ordinary people living our lives,” Naomi said.
“You hear about bad things happening in the world, you just don’t expect it will happen to you.
“It really changes the path of your life. It changes you to the core.
“While we couldn’t save Lola, we hope to still make a difference by raising awareness and donations.
“We hope one day cancer is something no families will ever have to go through.”
Lola’s family are sharing their story in support of Children Cancer Institute’s Christmas appeal. You can donate here.
