How Camp Quality helped Leo and his family find joy after stage 4 cancer

Leo was a happy six-month-old baby, reaching all his milestones and described by his mum, Jennifer, as ‘cheeky’ and ‘joyful’. When Jennifer noticed Leo’s tummy was a bit firm, she assumed it was the result of transitioning to solid foods, and his doctors initially agreed. But Leo was sent for an ultrasound as a precaution.

The only appointment Jennifer could get for an ultrasound was on Christmas Eve. “As the sonographer was looking at Leo’s abdomen, I just knew from the look on her face that there was something not right.”

Jennifer got a call from her GP to come see her immediately, where they were told Leo had abnormalities throughout his liver. The family were sent straight to the Queensland Children’s Hospital, where more testing showed the cancer had spread to Leo’s lungs. Little Leo was diagnosed with Stage 4 hepatoblastoma. Like many children with cancer, Leo’s diagnosis came suddenly and changed everything for his family.
When Jennifer heard the devastating news that Leo had been diagnosed with stage 4 cancer, she shifted into survival mode, relying on her medical background to help guide her.

“I went into autopilot mode because of my veterinary background, and I lost my best friend to skin cancer. So, for me it was just getting into that medical mindset of, right, that’s what it is, what’s the prognosis? What do we need to do? I just got into organisation mode,” says Jennifer.

Leo and his mum spent that Christmas in 2021, New Year’s and the following weeks in hospital starting chemotherapy. The following months were chaotic too, with frequent blood tests, blood transfusions, more chemotherapy, emergency visits and nasogastric tubing for medication and milk.

The following Christmas Day, in 2022, was spent in hospital too, as Leo finished his chemotherapy treatment. While many of the tumours had shrunk, there was still a tumour in his liver and the family were told they needed to find Leo a new liver. While they were waiting, the cancer continued to grow.

“We started to prepare ourselves for palliative care, but after another round of chemotherapy and three weeks of waiting, we finally got a call,” says Jennifer.

Leo had a liver transplant immediately and he defied the odds. He was out of ICU after four days and home just 13 days after the surgery.
“He’s very smart and determined and his name – Leo/Leonardo meaning brave-hearted and strong – suits him. He smiled and laughed his way through this journey despite feeling sick, tired and stuck in hospital,” says Jennifer.

For almost two years, Leo wasn’t allowed to be in water, even for a bath, to avoid getting his intravenous line wet. But now Leo is making up for lost time.

“Now that’s one of his favourite things – just getting wet. Now that he can, he’ll have three baths a day sometimes. He just splashes around, and we go to waterparks and we play. He runs straight into the ocean at the beach … he just wants to go into the water,” says Jennifer.
Leo is also enjoying spending time with his older brother, Kai, who was just 12 when Leo was diagnosed, and was unable to be by his side.
“Now that Leo is home more and Kai can be with him, it’s great. They rough play, and you know, kick the ball around and just have fun,” says Jennifer.

Leo’s diagnosis and treatment took a significant toll on the entire family, with Jennifer describing life as being ‘in a bubble’ throughout the cancer treatment.

“I was a very social person, but we became very isolated because you feel like you don’t want to talk about what’s happened. You feel like that’s all you’ve got going for you at the moment. It takes over your life, it really does.” says Jennifer.

Jennifer heard about Camp Quality when Leo was first diagnosed, when she was provided information on different support services.

A year and a half after Leo’s liver transplant, the family was finally able to experience something positive outside of the hospital, thanks to Camp Quality. The Camp Quality Family Retreat was a much-needed break that allowed Leo to play and interact with other children, something he hadn’t been able to do since his stage 4 cancer diagnosis

“It was the first time Leo had been around a lot of other kids since treatment and he was able to splash about in the fountains at the park, so to me that was the highlight – that he was actually experiencing something outside of hospital. It was so nice for us to observe, walk around, and swim. Kai enjoyed it too, just getting out to a new environment for a couple of days, it was nice. A nice break, refresh, reset,” says Jennifer.

“It was amazing just to have support to get out, because we hadn’t actually done anything like that since before Leo was sick. It was so amazing to sit there and watch my two sons together outside in the sun, around other kids; just being happy and free and enjoying being brothers.”

Leo has hearing loss from his treatment and has missed out on early years of socialisation and engagement with other kids. Leo’s medical team have recommended that until his immune system is strong again, he should remain homeschooled.

Leo is working with an in-home educator and speech pathologist, and his speech, understanding and mobility is improving. “We’re playing a bit of catch-up at the moment, trying to get him up to the level where he can go to kindergarten next year,” says Jennifer.

Although Leo is now in remission, his experience as a child with cancer continues to shape his life. Thanks to our programs, children battling stage 4 cancer and their families are able to find moments of joy and relief during the toughest times.

If your child or a child you know has been diagnosed with cancer, please reach out to us. Let us help bring fun, positivity, and much-needed support into their lives.