Lilly's Story - Camp Quality
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Lilly's Story

Lilly's Story 

There are many layers to this family’s heartbreaking story. Six-year-old Lilly is fighting blood cancer. Her siblings were separated from their mother for 10 months due to COVID-19. And when Lilly finally returned to school was bullied. To protect the family’s privacy, we have changed all names and used models in our photography. However, their story – and their pain – is all too real.

Just days before Australia went into its first lockdown, six-year-old Lilly was diagnosed with acute lymphoblastic leukemia. Her mother Chloe says,

“Lilly had next to no red blood cells in her system, no platelets as well. She was completely and utterly depleted of everything.”

Hospitalisation, never ending tests and gruelling rounds of chemotherapy began immediately.

A week later, the country went into lockdown and all the little comforts and activities that make a hospital stay a bit easier disappeared overnight. The doctors and nurses started wearing full PPE, which was terrifying for a six-year-old.

Lilly’s siblings were no longer allowed to visit and Chloe had no choice but to send them interstate to live with their grandfather so that she could stay by Lilly’s bedside.

Chloe spent 10 long, lonely months at Lilly’s bedside as she fought for her life. The only connection to her other children was online. She sent photos of Lilly’s treatment every day to her siblings who struggled to understand what was going on. For those 10 long months, Lilly’s iPad was her only escape from the hospital and the only distraction from the pain of cancer. 

So many families like Chloe’s rely on digital services for support while in isolation.

Camp Quality has been creating digital services to support these kids, like our Happiness Hub website, the Kids’ Guide to Cancer app and Puppet Digital Playdates that bring a digital dose of happiness right to a child’s bedside.

Lilly’s family was reunited early this year, but Chloe says their life will never be the same again. Lilly will need regular chemo until mid-2022, and the separation has taken its toll on the family. Chole says,

“Anger and hurt are the main emotions my other kids are feeling and letting out, which makes everything with Lilly a thousand and one times harder. This is a whole new world for me, and I don’t know what I’m doing.”

Earlier this year we invited Chloe and her kids to take a break at one of our Family Camps, an opportunity to have some fun, reconnect with each other and meet other families who understand what they are going through. 

“That was our first time as a family doing anything since the diagnosis that’s not been in my home. So it was huge for us all.”

While they were at camp, Chloe shared Lilly’s difficulties returning to school with the Camp Quality team.

"On her second day of school she had a child pull her nasogastric tube. It came right off her face, and it was about 10cm out. And then she had a direct exposure to chicken pox.”

With Lilly’s suppressed immune system, exposure to any childhood illness could be life-threatening.

Another parent confided in Chloe that their child was scared to play with Lilly after she’d lost her hair. Chloe realised it was something she needed help to address.

Camp Quality arranged for a school visit from the Camp Quality Puppets (Primary School Cancer Education Program) to help Lilly’s classmates understand what she had been through. Simple things, like explaining that they couldn’t catch cancer, made Lilly’s life so much easier.

Camp Quality is in the process of further developing our school puppet shows for streaming, so they can be accessed by teachers anytime, anywhere in Australia.

We need your support now, more than ever, to help us develop more digital support services so that, regardless of lockdowns, kids facing cancer and their siblings can get the support they need, in the comfort of their own home or hospital bed, 24 hours a day.