Kahli-Mai fights cancer after she’s born with an 18cm cancerous tumour on her face

When Kahli-Mali was born, her parents were told not to worry about the growth on her face. Nine days later, they found out the truth.

Kahli-Mai was born with an 18cm cancerous tumour and now must travel overseas for lifesaving radiation treatment. Picture: Keryn Stevens

First-time parents Thalia Williams and Wayne Loo-Joss were told their baby girl would be born with a strawberry birthmark on her face roughly five centimetres in size.

But when Kahli-Mai Joss-Williams was born with an 18cm cancerous tumour instead, the Port Lincoln parents and doctors were shocked.

“From there it was really stressful,” Ms Williams told The Advertiser. “She was roughly nine days old when we found out the diagnosis.”

Kahli-Mai was born on April 12 with rhabdomyosarcoma – a highly aggressive form of cancer that develops from mesenchymal cells – that she’d been developing it while still in the womb.

“This baby is so sick and diagnosed with something that nobody should ever have to go through,” the 26-year-old mum said.

Only a few months old, Kahli-Mai underwent surgery to remove the tumour but not all cancerous cells were removed. Picture: Supplied by family

On July 28 when Kahli-Mai was only a few months old, she underwent surgery but not all the cancer cells were able to be removed.

“We’ve tried everything that we possibly can within the Women’s and Children’s Hospital … but given the chemo treatment is never going to completely take away the cancer cells … Kahli and I have to spend about two months overseas in April next year because now, we have to take the next steps into radiation,” Ms Williams, who is Kahli’s full-time carer, said.

“It’s definitely not easy, it’s not what we were wanting. We were told that we’re going to steer clear from radiation as much as possible but given the severity of it … it’s the reality.”

According to Ms Williams the radiation her daughter needs, which includes neutrons, is not available for Kahli-Mai in Australia and the young family will need to travel to the UK or US.

She said undertaking radiation therapy might increase Kahli-Mai’s chances of becoming cancer-free.

“It’s crappy but it’s how it is,” she said.

The type of cancer the five-month-old has began with “one tiny little cell of cancer” that grew while she was in the womb and it took 20 weeks to develop into the 18cm tumour.

“Given she still has active cancer, all it takes is for one of these little cancer cells to turn aggressive and we could be in a situation where we were at square one,” Ms Williams said.

“We could end up with a brand new tumour, the same size, maybe a bit smaller, maybe larger, and then we’re going to have to start the whole process all over again.

“It’s so stressful, very stressful.”

On top of supporting their sick child, parents Thalia Williams and Wayne Loo-Joss are unable to secure long-term housing. Picture: Keryn Stevens

When Ms Williams was told her nine-day-old baby had cancer she said she “couldn’t feel anything”.

“I completely shut as soon as I heard that word,” she said. “I thought they were messing around.

“If I’m completely honest, my child is five months old and I still haven’t actually come to terms with the diagnosis … that this is our everyday … this is what we’re fighting.”

On top of everything they are also facing insecure housing.

When Ms Williams first came out of hospital she was placed in accommodation with her partner Mr Loo-Joss, who now works as a retail employee back in Port Lincoln to support his family.

“Kahli and I are now in temporary housing fighting every day to get some sort of private rental or trying to get a housing trust house,” she said.

“We are fighting every day to get something and now because of the severity of the situation with Kahli’s health, given that we are having to travel out of Australia overseas, when coming home, I have this massive anxiety on my shoulders because we need to be coming home to a home not coming home to search for a home.

“Kahli will be so vulnerable.”

If you’d like to support Kahli-Mai and her family, you can here