“When they told me what was wrong, I just kept screaming: ‘I’m going to die! I’m going to die!” As I sat with Sofia inside her large yet cosy home, I noticed the family photos scattered along the walls. They showed a much more naïve yet confident version of the girl sitting in front of me.
At the age of 13, Sofia Tsalidis was diagnosed with a rare cancerous tumour in her left knee, which now leaves a large scar with an incredible story behind it. Coming home one night in agony after soccer training. Thinking that it was just a pulled muscle, Sofia battled along. Little did she know that the pain would turn out to be more damaging than a sporting injury.
After multiple visits to the doctor, Sofia was told she was diagnosed with Ewing’s Sarcoma to which she screamed, “I’m going to die! I’m going to die! Get me out of here!” Ewing’s Sarcoma is a malignant tumour, which more commonly affects young adults. In Sofia’s case, both her knee and femur were removed and replaced with prosthesis. Slices of ovarian tissue was also taken in surgery, incase it was needed later on in her life, “Facing the thought of fertility issues at the age of 13 was very confronting.” Sofia, who was once an active and fun loving girl, was now unable to walk and completing harsh treatments including major surgeries and chemotherapy – something that no one should have to face.
After being transferred to Westmead Children’s ward, Sofia met her team of doctors. The first call of action to try and rid her of the tumour, was to have a major operation, which turned out to be one of many. Sofia’s large scar covers from the base of her left knee to the top of her thigh, forever reminding her of the difficult experience she had faced only a few years before. In August 2014, Sofia’s treatment began in hopes to rid her of the terrible cancer, which turned both her and her family’s world upside down.
When talking to Sofia, her large brown eyes show courage and gratefulness. Her voice trembles when recounting the events over the years 2014 and 2015, perhaps the hardest experience she will ever be a part of. She looks admiringly to her twin sister, Nicola, throughout the conversation. The strong bond between the sisters is visible when they interact, their eyes light up when talking about better times.
Sofia’s family was her biggest support network. Christina and Michali, her two older siblings as well as her twin, Nicola, created a safe place in their family home. No one in the household treated Sofia differently than before, which was comforting for the brave girl. The four of them were forced to navigate the foreign world of cancer and offer what support they could to their young sister.
Nicola found it difficult to support her sick sister, particularly when she would wake up through the night: “We share a room and she’d wake up screaming after treatment, I felt guilty that I was there doing nothing, and she had to deal with everything.” It was confronting for the pair when Sofia returned to school one day – the first time that entire term: “I was the centre of attention, I was in a wheelchair, wearing a wig and had never been so self conscious before in my life. It was so confronting.”
Sofia’s parents, Charlie and Luisa, showed as much support as they could for their daughter, which helps her stay strong. Alternatively, Sofia’s strength helps them. The whole family was now introduced to this foreign world of cancer, driving from Wollongong hospital to Westmead hospital regularly. The dull white rooms were home for the 10 months that Sofia was being treated. Sofia felt isolated and antisocial while she was being treated in hospital. She did not take up the opportunity to make friends with other children experiencing cancer treatments. Luisa was her key supporter during the hospital visits, staying with her overnight frequently, “It’s not only the child who is affected, but the whole family who has to learn to live with a different sort of normal.”
Although her family was supporting Sofia, she felt isolated and disconnected from her school friends. It was difficult for her friends to see her in Sydney, and it was a rare occasion that they would visit her at home. It made this already tough time a lot harder without the support from her friends. She was in denial that this horrible illness was killing her and found it difficult to be happy in the predicament that she was presented. She explains that she “always felt angry and upset, I never wanted to make friends with other people, I just wanted to be home all the time.”
As we continued talking and dipping our hands into a bowl of m&ms, Sofia explained to me what getting chemotherapy felt like, “It was truly painful and uncomfortable. Losing my hair wasn’t my main issue, though.” She explained that there was more to chemotherapy than losing hair, her skin dried up and ulcers covered the inside of her mouth, but her biggest concern was her newly non-existent immune system. “Whenever my temperature would reach over 38 degrees, I was at a risk of infection which had a higher chance of killing me than the cancer – that was scarier than being bald.”
When first finding out that she was diagnosed with Ewing’s Sarcoma, Sofia did not research about it, “I was being fed such raw and informative stuff that I didn’t feel the need to look it up – I was scared but I knew that researching it would make me think I was definitely going to die.” Sofia stayed positive that she was going to survive and get through this horrific experience, even though she felt sad that she had to be the person to experience it. Now, Sofia finds herself researching different types of cancers. After experiencing Ewing’s Sarcoma, she understands the effect that cancer has on people, and she is interested in the way different cancers can affect other people.
On the 6th of June, 2015, Sofia had her last day of chemotherapy. This momentous occasion meant that Sofia had completed her treatment, and was now a cancer survivor. Sofia’s eyes light up when she tells me about finishing up her treatment, she explains that she’d never felt so accomplished in her life, “I had fought off cancer, been through two major surgeries and had undergone chemotherapy! I survived!” After finishing treatment, Sofia has improved physically and mentally. She can now walk without the assistance of a walking aid or wheel chair and has not had a cancer relapse, which is common to occur in patients.
Sofia returned to school the following year to complete year 9 at St Mary Star of the Sea College in Wollongong. She has resumed her education as if nothing had happened, being told that there was no need to repeat year 8. Being an intelligent young woman, Sofia is excelling in her education although there is sometimes blank spaces where she would have learnt things the previous year. However, Sofia has learnt a lot more in the past year that you would not learn in school. Sofia learnt life lessons and matured at a young age in order to overcome and successfully beat her cancer.
Sofia’s mental development did not happen overnight, though. She gladly explained that there was support for her and her family through an organisation called CanTeen. CanTeen is an organisation for young people who have had an experience with cancer within their family. CanTeen provides a support network of people who offer support through many mediums. Sofia often gets calls from the counsellors who help her overcome her sense of survivor guilt. CanTeen youth cancer services general manager
Dr Pandora Patterson explains that a cancer journey can be quite an assault on people’s emotions, “When a young person themselves or someone they love, like a sibling or parent, is diagnosed with cancer its extremely confronting.”
CanTeen organised a youth summit, which was held last year. The summit invited cancer survivors and their siblings to come together and discuss their experiences. The summit helped young people discuss difficult issues such as fertility, relationships and survivor guilt. For Sofia, it was a chance to talk about life after treatment. Dr Patterson explains, “the forum was the first of its kind in Australia, and it provided the opportunity to sped time with others who have been through similar experiences”.
Sofia, now 16, is a more confident girl than she was 2 years ago. She shows off her large scar with pride and is more than happy to talk about her intense experience. She receives support through CanTeen, her school friends, and her family. All of which, have helped her improve mentally and put her in a better mind frame. Although Sofia is no longer able to participate in the sports she once loved, she is more than grateful to be alive and be able to walk without assistance. She exclaims, “I survived! I am happy and healthy and yet to relapse! If I can get through it, anyone can!”