With Freyja too ill to go to school, something incredible came to save the day...
Here, Lizzie Christiansen Young, 48, tells the story in her own words.
T￼he instant my bottom hit the chair, I knew I’d been tricked.
With an almighty squelch, the strategically placed whoopee cushion let out a long, familiar sound. As it ripped, the room erupted with laughter. I’d know that giggle anywhere! I thought. It belonged to my six-year-old girl, Freyja, who adored playing pranks. But she was tucked away in a bed down the long hospital corridor. Incredibly, I could hear her laughter through a robot! As sci-fi as it sounds, this piece of machinery was her saviour.
A year earlier, Freyja had just graduated from pre-school when a nasty lump in her neck was diagnosed as stage four clear cell sarcoma – an extremely rare soft-tissue melanoma. Terrifyingly, it was inoperable, so her doctors prescribed 10 months of intense immunotherapy to shrink the tumours. ‘Most people with this type of cancer only survive seven months,’ the oncologist told me, gently. The treatment partially worked, buying my girl more time. But it zapped her energy and made her more susceptible to catching colds and flu. Her shiny black shoes and new uniform were all ready to go, but kindy was the worst possible place for her. Play dates were out of the question, and Freyja’s big sisters, Inge, eight, and Brynn, 10, had to miss school too, in case they brought home a bug.
Relocating to Ronald McDonald House, my girls attended school at the hospital. It’s just not the same, I thought, upset that they were missing out. Freyja’s friend Gus had saved a seat for her in their classroom, which no-one else was allowed to sit in. I so wanted her to be able to go. And then something amazing happened. I was put in touch with a supermum named Megan who’d co-founded the Missing School program, which planned to send mobile robots representing sick students into the classroom. The cool concept evolved after her then 10-year-old son, Darcy, had a bone marrow transplant and had to miss 18 months of school. ‘I want Freyja to be the first to try it!’ Megan smiled. Meeting her robot for the very first time in the hospital last September, my girl was enamoured. Freyja had no control of her cancer, but she was able to command her robot from my laptop with a click of the keys and a swipe of the mouse. The web camera on the computer linked with the screen on the bot’s ‘face’, so she could see everything through its ‘eyes’. Naming her new pal Wonderbot, Freyja soon had her friend dancing to and fro and chasing me down the corridor. My cheeky girl even used Wonderbot’s camera to zoom right in on me to capture my reaction as I sat on that darn whoopee cushion! Hearing her naughty giggle made every embarrassing puff of air worth it.
Two months later, Wonderbot met Freyja’s kindy class. The second that ‘virtual’ Freyja entered the room, the kids went wild. ‘Hey you guys!’ she exclaimed through the microphone. ‘Hello!’ the class chorused back. ‘Freyja, you’re going into the table, you can’t move forward, you should go backwards,’ a little girl instructed, helpfully. With a devilish grin, my girl did the exact opposite, mowing right into the table. Feeling connected to her school pals, Freyja’s smile reached from ear to ear. Now, Wonderbot lives at kindy, meaning Freyja can check in whether she’s at home or in hospital.
This year, Brynn and Inge went back to school. Walking in the door every afternoon, they have to strip down straight away, so I can chuck all their clothes into the wash. Scrubbed clean in the shower, only afterwards can they play with their sister. We simply can’t allow nasties into our home that could affect Freyja’s health.
Just last month, another robot came to the rescue. Operated by a team of specialists, the state-of-the-art machine looked like it belonged in Star Wars. And it had a very important task – to remove the tumours growing on the left-hand side of Freyja’s neck and head – one of which was golf-ball sized. They were growing in a hard-to-reach spot between an artery and the base of her skull. But during an epic surgery – the first of its kind in Australia – the robot entered through Freyja’s mouth and extracted the previously inoperable growths! ‘Well, did you do it?’ Freyja asked her favourite surgeon, Dr Ben Dixon, afterwards.‘Yes!’ he grinned back.
We’re still not out of the woods. Sadly, the hint of a tumour has been discovered on the right-hand side of Freyja’s neck. But I’m hopeful. We have technology on our side. I’m nuts and bolts about my girl and I’ll do anything to save her.
To help fund a cure go to: acureforfreyja.com/how-to-help
Read more in this week's issue of that's life!