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Each year in Australia, 90 children and adolescents are diagnosed with sarcoma. Sadly, the rate of survival for those diagnosed with high-risk osteosarcoma (bone cancer) is still only 50 per cent. Anya’s Wish and the 19 for 19 Challenge is on a mission to change this statistic and, thanks to the resounding support of the Armidale and regional NSW community, along with Tour de Rocks and Tour de Cure, world-first research breakthroughs are being discovered. This year’s 19 for 19 Challenge will be held on Sunday 20 October, and continue to raise funds for this crucial line of research. It will also forever honour Anya, a vibrant, kind, remarkable young woman who fought to the end. Here’s how her dying wish has changed the face of osteosarcoma treatment forever, as told by her mother Liz Egan.
We were this little family living our life in Armidale. Anya was about to go into year eight, her younger brother Alex was heading into year five. They’d spent the last week of the Christmas holidays at the beach with their dad and when Anya came home she had a sore knee.
Anya couldn’t recall any kind of trauma to the knee, it was just sore in the general area. After a second visit to the physio, he said that he couldn’t quite put his finger on what was happening and recommended that we go for an X-ray.
With hindsight, we were so grateful for his astute advice, which led to a prompt diagnosis. When I went to pick Anya up after the X-Ray she said, “Mum, all these people came into my room afterwards and they were asking me lots of questions, like how old I was”. She was clearly disturbed.
We were asked to stay and meet with the visiting radiologist. I can remember sitting in his room, Anya by my side, staring at the X-ray on the screen. You could clearly see there was a difference on her left femur, but he didn’t articulate exactly what it was. He was obviously concerned. He told us he’d made an appointment for Anya to see the local orthopedic surgeon first thing the following morning.
We were shaken and nervous about what lay ahead. The next day, Anya got ready for school, like any other normal day. When we entered the surgeon’s rooms the health team greeting us seemed ruffled. We were immediately ushered in and sat down. In that moment he just leant across, put his hands on Anya’s knees, looked at her and said: “Anya, this is cancer.”
A new normal
It was 2015. Anya was just 13 years old and all she wanted was to be a normal teenager, attending school at home with her friends. Instead, we were booked into Westmead Children’s Hospital for urgent admission. We went home, packed a bag, got in the car and drove to Sydney. A series of scans revealed the cancer had sadly metastasized in her lung, which was devastating news. We were told this would take many months of intense treatment, living away from home, and include major surgery on Anya’s left leg. We made the decision that it was important to stay together as a family, and were so relieved to be provided with a small apartment in Ronald McDonald House. Alex enrolled in a local school and we hunkered in together, determined to do whatever we could to just get through this, so we could go home.
Anya started an intense chemotherapy protocol – they wanted to hit the tumor hard. After three months, scans revealed no more tumour in the lungs, meaning that she could now have major limb-saving surgery and a titanium implant. It was all happening so quickly and there was so much to take on, but her team was amazing and we knew we were in good hands, even though now we realise the treatments Anya received were brutal and had not changed much in decades – much the same as survival rates.
Anya was tough. She faced everything head on, keeping close contact with her friends and her school back home, and never once complaining.
We lived together at Westmead for 10 months, finally making it home with an ‘all clear’ and Anya’s central line being removed on the 16th of December in time for Christmas. A highly anticipated family holiday was spent at the beach with some very dear friends, but when we arrived home Anya noticed considerable bruising down the back of her left leg. There was no option, but to return to her team in Sydney.
It wasn’t good news. Anya had experienced a very quick recurrence, caused most likely by resistance to the chemotherapy. Our poor darling immediately had a second major surgery to remove the tumor that had grown again. I’ll never forget her oncology consultant saying to her, “Anya, we’re in mongrel territory now”.
They had to throw every treatment they had at her. They went hard and we learned that, unlike adult protocols, with kids they treat for cure, not just prolonging life – regardless of the long-term health effects. This meant massive quantities of chemo and radiotherapy. Anya underwent five days of five-hour chemotherapy sessions. At the end of it I was left with this frail little poppet. I was just beside myself to see her this way. After this, the radiotherapy began – which literally burned the skin off the back of her leg. On top of everything else, the next few months were spent caring for her wounds, including intense and painful oral mucositis, meaning that she could not eat. What she put up with and how she faced the barrage of treatment was just astounding.
Going home
After a further six months in Sydney we were able to return to Armidale. We couldn’t quite believe it! Even more remarkable was the fact she’d kept up with her studies the entire time, thanks to being tutored by a beautiful friend of ours. Anya couldn’t bear the thought of being different or having to repeat school, so even after all that adversity and treatment, she was able to walk back into year nine, rejoining her friends midway through the year.
Anya made it successfully through to the HSC and was having a gap year then COVID hit. Throughout this time her team had been routinely checking every three months, and Anya transitioned from Westmead to the Chris O’Brien Lifehouse. Her check-ups were then pushed out to every six months. We lived in trepidation before each scan and the waits afterwards were almost unbearable. Throughout all, Anya kept her spirits high. Carried by her cheeky attitude and a wonderful sense of humour, which brought so much levity to those around her.
Then in May 2020, a routine scan showed activity in her lung. We were deeply concerned. To make matters worse, due to COVID we couldn’t access her team in Sydney. Thankfully, we eventually found ourselves in good hands, with a top lung surgeon at the Chris O’Brien Lifehouse. The activity in the top right section of her lung was removed and after an anxious wait, by mid-August they confidently told us that the scans were all clear and that the operation had been totally successful. Anya would not require chemotherapy. Her worst fears had been avoided, and we were elated.
The recurrence
A few weeks later, we were celebrating my birthday as a family. There we were, all together, surrounded by our whole family. I just sat there staring at my beautiful daughter who was aglow, on the threshold of life beyond school. She had a wonderful boyfriend by her side, a job at a local art gallery, and plans to move to Brisbane to study communications and digital media at QUT. We were all so excited.
The next morning, 1 September 2020, Anya came downstairs and said: “Mum, something’s wrong. When I lift things at work, or even walking up the stairs, I’m short of breath.”
We had a few initial scans done in Armidale, then made the decision to get in the car and head straight to her team in Sydney.
Ten days later she was gone.
Anya had experienced a horrific, fast recurrence that took her from us so quickly. Her orthopedic surgeon told me that 20 per cent of his osteosarcoma kids are affected by a fast recurrence that, like a switch being flicked, turns on the disease with a vengeance. Dormant cells invisible to scans somehow explode forward and spread rapidly. There was nothing anyone could do.
Anya was devastated. There she was, 19 years old, on the cusp of life and there was nothing more her team could do for her. She spent most of her last days in an opioid haze, surrounded by all of us. She continued to fight hard to live, coming in and out of consciousness. Incredibly, nearly every night at around 2am, she’d sit bolt upright and start communicating with us, telling us all her passwords; her accounts to close, and what gifts to buy for her boyfriend and close friends for their upcoming birthdays and Christmas.
During one of her final lucid moments she said emphatically, “You’ve got to do something about this”. Anya wanted us to use her body and her experience to change the outcomes for others who suffer from this awful disease.
Making change
I’d been following the Children’s Cancer Institute on social media for a while – I’d noted that in 2019 they employed Dr Emmy Fleuren. Emmy had come from the Netherlands, drawn by some of the CCI’s leading research to head up their new sarcoma program. We lost Anya in the September and by her funeral two weeks later, with the help of our community, friends and family, we had raised $75,000 for osteosarcoma research. Still in the depths of grief, a few months later we found ourselves at the Children’s Cancer Institute with a room full of people talking about how we could fulfill Anya’s dying wish.
A few months later Emmy presented us with ‘Anya’s Wish’ – a $600,000 three-year research project aimed at finding more effective and safer treatments for osteosarcoma.
Naively, we hoped that we would find a couple of benefactors to help achieve this target, but then a friend of Anya’s suggested a fundraising walk, as she could not run due to her prosthesis. That’s how the 19 for 19 challenge began – 19 representing the precious years she had with us. As a family our favourite bushwalk is the Blue Hole. I asked a close friend to find me 19km of stunning New England country near Gara Gorge. He came back with a map and said, “go and find the people who own this property”. The property was Kenwood Park, owned by the wonderful Coffey family who hosted the first three years of the 19 for 19 Challenge.
The event has grown every year since – first 200 people, then 400, followed by over 500 attending. We reached the $600,000 goal by year two and world-first results were being achieved in the lab as a result. In a world first, Emmy and her incredible research assistant Zara Barger developed a method for keeping osteosarcoma cells alive in the lab long enough to do testing on them with some highly prospective drugs A and B. Drug A tests subsequently proven to be successful in killing osteosarcoma cells, without damaging healthy ones, which is why chemo causes so much long-term damage to patients.
This is phenomenal, and it’s happened in just three years.
Due to this early success and newly discovered prospects, and in discussion with Emmy, we now want to continue to support her research. A future focus of Emmy’s research is to understand why 20 per cent of kids with osteosarcoma experience a fast and deadly recurrence like Anya. That’s why Anya’s Wish will continue beyond its original three-year plan, with a new goal of $1.4 million and thanks to the support of our incredible community and the 19 for 19 Challenge entity Tour de Rocks.
When we lose a child we have two options. We can bury ourselves in grief or push off from the bottom, and transform the pain into healing – for ourselves and for others. This will be Anya’s legacy, and I’m so deeply touched and proud of our incredible community.
Event details
The 2024 19 for 19 Challenge will be held on Sunday 20 October. The committee are delighted to announce a new ‘exclusive access’ 19km for the walk, which will encompass three stunning properties Victoria Park, Mount McDonald and By Gorge – each with unique vistas across the escarpment to the finish line at the magnificent Dangar’s Falls. Why not grab some friends and consider a team! You can find all event information and register here.
