In 2013, Sophie Kyprianou was enjoying what she describes as “a trip of a lifetime” in Europe with her parents, Cathy and Paul, and younger siblings, Sam and Jessie, when she began to experience pain in her right shoulder.
Like many 14-year olds, shopping had been high on her to-do list, and her mother joked that perhaps the pain was caused by the growing weight of her suitcase.
When she returned to Sydney, however, the pain continued, and it reached a point where she could no longer throw the ball in her school softball team. A physiotherapist suspected a shoulder impingement and gave her some exercises to do, but the pain was soon keeping her awake at night.
"We went back to the physio, who ordered an ultrasound,” says Sophie. “The next morning, our GP called and told us to come straight in. I found out I had cancer.”
That day was 6 March 2014. Sophie was diagnosed with osteosarcoma, a rare form of bone cancer. “I remember screaming and collapsing against the wall of the doctor’s office. When I calmed down, I just thought, ‘Okay, what’s next?’.”
Sophie’s father was interstate at the time and boarded a plan home as soon as Cathy called him. “It would have been the worst flight of his life,” says Sophie. “Mum was a mess. It was such a shock.”
Within a week, Sophie started what she describes as “hard core chemo”.
“It was a massive shock to my body. I would sleep all day and would wake up to vomit. I’m 160cm tall and I dropped to 46kg.”
In June, Sophie had a full shoulder replacement, “I had to have another six months of chemo after that. Then, in December that year, I got all clear, which was awesome,” Sophie says - her illness had kept her out of school that year. She skipped year nine and went straight into year 10 in 2015.
“School was really hard, and socialising was also pretty tough, but I worked really hard," she says. "In one of my year 10 maths tests, I got 52 per cent, but then in year 11, I got 96 per cent. I’d definitely got back on track and was looking forward to my HSC.”
In December 2016, a routine blood test showed that Sophie’s haemoglobin levels were alarmingly now. A follow-up bone marrow test revealed that she had myeloid dysplasia syndrome (MDS) a cancer that affects the production of normal blood cells in bone marrow. It can be caused by chemotherapy or radiation therapy for a previous cancer.
A subsequent bone barrow test in February revealed that MDS had progressed rapidly. “It had turned into leukaemia and that meant I needed immediate treatment and went straight into hospital because I had to get on top of it before I could have a bone-marrow transplant.”
Sophie had the transplant in April 2017 and, after spending about three months in hospital, she went home. “I was basically in isolation so that I could recover, and it was pretty tough to have to be at home all the time.”
Her fight wasn’t over. In July that year, she noticed a lump on her neck and a biopsy of her lymph node revealed B-cell diffuse lymphoma, a rare form of immune system cancer characterised by overproduction of B cells.
More chemotherapy followed, however, as her bone marrow was so new, it presented significant risks. She was placed in an Intensive Care Unit and her siblings were sent to their aunt’s home in Dubbo so that her parents could be at the hospital.
“Both of them were staying at the hospital every night and took shifts to sleep,” says Sophie. “I finally got home and stayed in isolation until December. I can’t tell you how good it was to finally be able to leave the house.”
Sophie believes science is vital in ensuring that no other child will experience what she went through.
“Research is so important,” she says. “It is what's going to stop the disease from affecting anyone in the future and it will help to find best treatment if they are affected.”
“In 2014, when I was doing my last two rounds of chemotherapy, new research came out to show that one of the drugs I had been taking for a long time does more harm than good. If they’d made that discovery six months earlier, maybe I wouldn't have got sick the second time.”
This year, Sophie raised more than $14,000 for The Kids’ Cancer Project by sharing her story via the fundraising platform Everydayhero.
“For along time, I didn't want anyone to know about my cancer,” she says. “If someone would ask about my shoulder, I’d just say that I’d had a replacement.”
“Posting my story online to raise funds was one of the first times I've ever really shared exactly what's happened to me. I’m ready to talk about it now, but I don’t want sympathy.
“I wanted to raise funds for The Kids’ Cancer Project because I know lots of people who support it and I didn’t want pick a specific cancer – I wanted it to be of benefit to all children with cancer. I think everyone's willing to donate to a cause like this, but you just need to give them an opportunity to do it.
Sophie describes her experience with cancer as “a story and a half” and says she has her mind on her future. Now 20 years old, she is completing her first year of event management studies at University of Technology Sydney.
“I want to run big charity events, like massive gala balls to raise money,” says Sophie.
“I’m looking to do a charity event next year,” she adds. “If it goes well, I’ll make it an annual event, and make it bigger and more successful each year.”