When Naomi and Aaron think of their daughter, they remember her bright spirit, infectious 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 wrong – before she sadly passed away a few months later.
In 2021, the adorable ‘chubby-cheeked’ baby was a thriving and healthy baby hitting all her milestones.
Her arrival in the world made the Ross family complete, with Naomi and Aaron delighted that their eldest children Toby, 11, and Maya, seven, had a little sister.
But when she was 10 months old, doctors revealed the shocking news 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 something like this could ever happen to us.”
“The first thing we noticed was that she was vomiting a bit, but we put her down as a nursery bug and didn’t think much of it.”
“We had been to the GP about it but nobody was too concerned.”
“One thing we had noticed but also didn’t think much of was that she had a slightly crooked smile.”
“We joked about it a bit and laughed, but we didn’t dismiss it as something bad.
“One day she just looked not well and a little empty. I knew something was wrong with his stomach, so we took him to the hospital.
“Another thing is that we noticed that she started using her right arm more than her left. We thought that was strange.”
‘Something was wrong’
The doctors noticed Lola’s crooked smile and coupled with the fact that she was no longer using her left arm, they decided to run several different tests to find out what was going on.
“We were scared. We didn’t know what was going to happen,” said Aaron.
“We just had a feeling that something was wrong when the doctors and nurses were talking behind a window and asking for some time to get out.
“At 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 just 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 in Lola’s brain. The next morning, she was rushed to an operating room.
Devastating diagnosis
After eight grueling hours of walking the halls of the hospital, Naomi and Aaron received the shocking news.
Surgeons had found a brain tumor the size of a tangerine from their daughter’s brain.
“That was one of the hardest things, getting it to the surgeons to open it up,” Aaron said.
“We were sick with worry for those eight hours. When they returned they said they had removed what they could.
“It was really confronting to see him after the operation. She had tubes everywhere.
“But we were very thankful that she was alive.”
A biopsy determined Lola’s diagnosis: she had an embryonal multi-layered rosette tumor (EMR).
It is a very rare and aggressive brain cancer that has a very high chance of recurrence without any targeted treatment protocol.
She underwent three rounds of high-dose chemotherapy, which began just before her first birthday.
But alas, a follow-up scan revealed some terrible news.
There was residual cancer in her brain, meaning she would need a second operation, more chemotherapy and more radiation.
Lola underwent her final radiation treatment on Christmas Eve and then went home to celebrate what would sadly be her last Christmas.
“We tried everything”
Over the next month, the family spent time together making precious summer memories that will last a lifetime.
On February 2, Lola went for an MRI. That afternoon, the oncologist called to say that, although the radiologist’s official report hadn’t come in yet, he didn’t 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 shocking moment when we realized the worst could happen,” Naomi said.
“It took a few weeks but eventually we were told 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 didn’t know exactly how long Lola had left — doctors said it could have been as long as 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 it got worse quickly. She wasn’t really responding and her breathing was labored.
“Our nurse agreed it was only a matter of hours.
“We all sat on our bed together and hugged. We sang some songs and talked with him.
“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, specifically RT.
They honor Lola in small ways every day by talking about her and speaking her name. Every Christmas, they have a stocking with Lola’s name on it.
Since her death, Naomi and Aaron have gone on to have another daughter named Edie, now one.
“Keeping Lola’s spirit and name alive is a big part of our healing,” Aaron said.
“We have it ready for Christmas. We took out the ornaments on her grave and decorated her for Christmas.
“In our Santa picture, we have a picture of her with us, so she’s included.
“We just try to do the best we can and keep it close.”
Naomi and Aaron recently attended a talk at the 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 them to happen to you.
“It really changes the course of your life. It changes you fundamentally.
“While we couldn’t save Lola, we hope to make a difference by raising awareness and donations.
“We hope that one day cancer will be something that no family will have to go through.”
Lola’s family are sharing their story in support of the Children’s Cancer Institute’s Christmas appeal. You can donate here.
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Image Source : nypost.com