“Alice smiles through every single day” says her mum Sian, which is incredible given what the little girl has been through.
When Alice was just three years old, she was diagnosed with Orbital Rhabdomyosarcoma, a rare and invasive soft tissue cancer behind her right eye.
Having been born with an eye condition, Alice was monitored by an Ophthalmologist every six months. Living in a regional town, this involved a seven-hour drive to the nearest major hospital.
Not long after one of Alice’s regular check-ups, where her eyes were given a full bill of health, Sian and her husband James noticed ongoing changes in her right eye.
Local doctors and specialists continued to reassure Sian there was no cause for concern, but Sian was not convinced. She decided to make an emergency appointment to see Alice’s Ophthalmologist, making the seven-hour drive with Alice and her younger brother Henry to see them.
Sadly, Sian’s gut instinct had been right, and they were sent to the nearest children’s hospital for further testing.
“That was Alice’s first general anaesthetic, which turned into her first biopsy. It was midnight by the time Alice came out of theatre, and at 1.30am I met her Oncologist for the first time.” says Sian.
Two days later Sian and James’s worst fear were confirmed. Their little girl had eye cancer, and would require immediate treatment.
“We were so overwhelmed,” recalls Sian. “We didn’t understand the language of the hospital. There were so many questions but we also didn’t know what to ask. Everything was confusing.”
Sian was forced to stop work to be with Alice, and James and their three boys William, Xander, and Henry packed up their lives and relocated to the city to be closer to the hospital.
Alice endured six months of chemotherapy and 28 rounds of radiation to her right eye. Her treatment involved long hospital stays, periods of isolation and many days of feeling sick and lethargic as a side effect of the medication.
Thankfully, Alice’s cancer responded well to the treatment. By the end of the year she was cancer free, and happy to return to all the activities she loved.
Devastatingly however, just six months later the cancer had returned. The tumour was again wrapped around her optic nerve, but this time, was growing aggressively.
Again, James and Sian were faced with unthinkable news. Doctors would need to remove Alice’s entire right orbit, including her right eyeball and everything around it.
“We had to sacrifice Alice’s vision to save her life” says Sian as she explains how Alice has been left with a golf ball sized hole where her right eye had been. “We know what she has been through has saved her life, but we also know it comes with a huge cost that will effect her for the rest of her life.”
Since her very first week in hospital however, Alice has had her good friend Captain Starlight by her side to help her positivity and sunny disposition shine.
Finding herself among kindred spirits in the Starlight Express Room, Alice went there every single day when she was well enough to do so. She loved to laugh and play silly games with the Captains, and to paint and craft, escaping the realities of the hospital wards and painful treatments that had taken over her life.
When Alice was unable to visit the Starlight Express Room, Captain Starlight would always stop by the ward to help keep her smile shining brightly.
Alice’s brothers also love the Starlight Express Room, especially the gaming stations, and even ask to go there when Alice is not in the hospital!
A key highlight for Alice on her treatment journey was learning she would be granted her very own Starlight Wish!
Alice had always wanted a camper van, just like Peppa Pig’s! So that was exactly what she asked for, dreaming of using it to visit the friends and family she hasn’t seen since her family left their home town.
“Having the camper means that we can easily escape for a road trip to visit special people who we don’t see anymore. Our family can go on adventures and make memories together as much as life allows. It really means the world to us.” says Sian.
Following her eye removal, and several more rounds of chemotherapy, Alice is now cancer free.
She has started Prep, and is seeing a team of specialists who are creating a prosthetic eye piece for her to wear, if she chooses. As ever, she is full of positive energy and sparkling smiles despite her traumatic ordeal.
Sian and James are so thankful to those who support Starlight in creating this much needed happiness for children facing serious illness.
“What Starlight offers is important. It matters. Giving our children a sense of fun, laughter and happiness is paramount to their wellbeing. Even though they are navigating tough times, they still deserve to feel like kids. Starlight gives that to them, and we are so grateful for their ongoing support.”
