Freya and mum Lizzie pre diagnosisIt was just before Christmas 2016, and Freyja and her two older sisters were full of giggles after enjoying a fun day horse-riding.

As mum Lizzie helped wash the mud off her youngest daughter, she felt a lump on her neck. Her youngest child then developed fever-like symptoms and it was thought Freyja may have glandular fever.

To double check the lump, doctors at her local hospital in Canberra performed a biopsy.

The test results changed the family's life forever.

Little Freyja was diagnosed with cancer and needed to start treatment immediately at Sydney Children's Hospital, Randwick - kilometres away from the family home.

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It was devastating being told that Freyja's tumour was likely inoperable and potentially incurable. How do you tell your five-year-old she has cancer? It was the hardest conversation I think I will ever have with my daughter and her sisters.
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Freyja's mum, Lizzie

After numerous tests and scans, doctors discovered Freyja had a very rare form cancer known as Clear Cell Sarcoma.

Freyja in hospital

Lizzie said it was heartbreaking to hear the outlook for her daughter.
"I was left with the reality that I may only have six months to save her life."

Freyja started her year-long treatment of Immunotherapy to reduce the size of the tumours.

The family relocated from their home in Canberra for Freyja to be admitted to the Sydney Children's Hospital.

Freyja and sisters in hospital

It was emotionally and financially draining. Lizzie is a single mum, originally from the UK, and it was hard to cope without her family support nearby to lean on.

All three girls missed their school friends from the nation's capital as they tried to adjust to their new life in Sydney.

Freyja is an outgoing, social kid and Lizzie said it was crushing to see her struggle being away from all that was familiar to her.

Thankfully, one positive that came into their life amid all the pain and sadness, was being introduced to Starlight's hospital services.

Lizzie describes the Starlight Express Room as an oasis for kids and families.

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Captain Starlights lift the spirits of the sick kids and their families as soon as they step into the Starlight Express Room. The kids can do just about any activity they choose and the effect of the kids being able to take back some control over their circumstances is incredible.
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Freyja's mum, Lizzie

Freyja and sisters in Starlight Express Room

Freyja's older sisters Inge and Brynn love going to the Starlight Express Room, and it means the world to Lizzie to know there's somewhere for them to go and have fun when Freyja gets tired and needs a rest.

The Starlight Express Room also gives Lizzie a place to recharge and connect with other parents, and she's made life-long friends with other hospital families.

Freyja and sister with Captain Starlight

"It's meant so much to me as a parent - I can go in there, shake off any bad or sad thoughts and just be in the moment with my kids."

After a year of immunotherapy, Freyja's cancer reduced, but sadly once she came off the treatment, her lump grew again.

The side effects of Freyja's Immunotherapy also took a massive toll. Freyja has an autoimmune reaction, HLH (Hemophagocytic Lymphohistiocytosis), causing her liver and spleen to swell and she's developed Type 2 Diabetes which affects her kidney function.

Freyja's everyday life is impacted by her cancer and the associated side effects. She's not been well enough to attend a 'normal' school but is tutored by the hospital school and participates in music and art therapy.

Freyja doing craft in hospital bed

Sadly, her hands are often so swollen she can't hold a pen. But that's not stopped her passion for creativity and helping the environment. She's even got her sights set on one day producing a book or documentary to help kids solve environmental issues, destined to make the world a better place.

As Freyja's condition continued to worsen, she was referred for ground-breaking robotic surgery in Melbourne to try and remove her tumour.

While the surgery was successful, a post-operation review revealed some further devastating news. Another tumour appeared on the other side of Freyja's neck.

What followed was 28 bouts of radiotherapy. Freyja's weight fell to 19 kilos and she was sent back home to Canberra.

Freyja smiling in wheelchair

Unfortunately, Freyja is still not cancer-free and will restart a new 12-month Immunotherapy program back at the Royal Children's Hospital in Melbourne. While home in Canberra, Freyja looks forward to visiting her beloved Captain Starlights to bring a bit of joy to her hospital check-ups.

Freyja in Canberra Starlight Express Room

Lizzie said, "We're three years in of our journey with Freyja's medical story and initially we were told she wouldn't survive. Freyja is still battling side effects and persistent cancer, but we remain hopeful."

Lizzie is so thankful for the difference Starlight has made to her and the girls during the agonising years in hospital.

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It would really impact my child's mental health if Starlight wasn't in the hospital. It would be a missing crucial piece of the wellbeing puzzle. Sick kids don't have much to laugh about when they're stuck in hospital. Every donation will help bring hope and smiles to sick kids who really need it.
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Freyja's mum, Lizzie

Starlight Express Room

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