Lola had a sweet, crooked smile. It was the sign of a rare, aggressive cancer

At ten-and-a-half months old, Lola was a “happy, healthy” baby with a slightly crooked smile.

“We made little comments about it but didn’t think anything of it at the time, that was in hindsight,” mum Naomi Ross told 7NEWS.com.au.

It ended up pointing to a deadly cancer that would claim little Lola’s life.

Adored by her two older siblings, Lola was the “perfect” addition to the Sydney family when she was born in July 2020.

Things took a turn in June 2021, when Lola began suffering episodes of vomiting and high fevers.

Parents Naomi and Aaron chalked it up to a daycare bug, but knew “something didn’t feel right” when her condition began to deteriorate.

Trusting their guts, the couple took Lola to the hospital.

It was then that Naomi noticed Lola was only using her right hand, despite it being heavily bandaged.

“Then the doctor came in at one point ... she said, ‘Has she always had a crooked smile’,” Naomi said.

A neurologist was called in and Lola was taken for a CT scan and a few hours later, doctors delivered news the couple was dreading: “They found something, and it was big and it was deep.”

Before this moment, the couple lived in a “naive” and “blissful” bubble.

“I know these things happen in the world ... but to happen to us was something that we never sort of considered,” Aaron said.

“I’d been in denial saying, ‘Oh, it’s nothing’ ... and then to have it confirmed that it was something and it was bad ... I just remember, all of a sudden, that hitting us in the face.

“That sort of surreal, almost out-of-body experience, just sitting shell shocked.”

The following morning, Aaron and Naomi faced the difficult task of handing their little girl over for surgery.

“We didn’t know what was going on, we were just giving her over to them to go and open her up,” Aaron said.

After about eight hours of pacing the halls, the couple was told surgeons were able to remove most of Lola’s tumour, which was about the size of a mandarin.

A biopsy determined her diagnosis: embryonal tumour with multilayered rosettes, a rare and aggressive brain cancer with a very high chance of regrowth.

Treatment was a whirlwind.

Lola underwent six rounds of high-dose chemotherapy, starting just before her first birthday.

Then a routine scan revealed more bad news: there was residual cancer on Lola’s brain, meaning a second operation.

“We needed green-lights the whole way to have a chance of surviving it, and this was a big setback,” Aaron said.

Lola was discharged from hospital after her final session of radiation on Christmas Eve.

During the time at home, Lola came back to herself.

“We tried to make it special ... we just wanted to give the kids some time together,” Naomi said.

The bliss was short-lived.

A follow-up MRI revealed things were not looking good.

Doctors had exhausted all options; palliative care was all that was left.

“They said maybe six months, but it turned out to be about six weeks,” Naomi said.

The family’s final days with Lola were spent in the “warmth” of home “soaking up time together” and making memories — capturing photos, videos and fingerprints.

On March 26, 2022, extended family were visiting the couple’s North Kellyville home for an early birthday celebration for their son, Toby, when it became clear the end was near.

One of the hardest parts came in the hours that followed Lola’s death.

“They took her away and she was gone,” Aaron said.

“It was midnight and it was raining and we were standing in the driveway and it was such a surreal moment.”

“How did we get here,” Naomi added.

A ‘bittersweet’ mission

Brain cancer kills more children than any other disease, according to the NeuroSurgical Research Foundation.

The Rosses want to help change that.

Naomi and Aaron know nothing will bring Lola back, but they hope her legacy can leave a lasting impact.

“I use the example of leukaemia, it was almost a death sentence when I was a kid ... and we’ve improved the outcome so much for that,” Aaron said.

With more research, doctors can improve the outcomes of childhood cancer but also make treatment a less gruelling process for patients, he added.

For Aaron and Naomi, the idea is bittersweet.

“That’s not going to help Lola, but ultimately, that chapter is done and closed and hopefully in the future it can be better for others,” Aaron said.

Naomi added: “The timing for us sucks, but I’m glad that we get to be a part of that and Lola gets to be a part of that.”

September is Childhood Cancer Awareness Month and Lola’s family are sharing their story in support of The Children’s Cancer Institute, the only independent medical research institute in Australia wholly dedicated to curing childhood cancer.

You can donate to the Children’s Cancer Institute here.