Elsa's Story

Sometimes it feels like yesterday that my little sister Kristen and I were boarding the plane and embarking on the adventure of a lifetime- we were moving to London. We had soon settled in and landed our dream jobs. We worked hard during the week and explored London and the rest of the UK and Europe on the weekends.

Just months after Kristen’s 21st birthday, she noticed that she was feeling somewhat bloated and fatigued and also feeling full, soon after eating. She didn’t worry too much, as surely it could be explained by her enthusiasm for food and leading a busy lifestyle. Subtle pains were also beginning to arise, and one morning Kristen felt an alarmingly sharp pain in her belly and decided to go to the GP.

Despite administering two failed pregnancy tests, the doctor suspected it must be appendicitis and sent Kristen off to the hospital to have her appendix removed. We thought this was quite an exciting adventure, however once Kristen awoke from her “surgery” everything changed. We were told the surgeon could not even see Kristen’s appendix, instead her entire abdomen was riddled with tumours. An MRI scan and biopsy pathology confirmed that Kristen had Stage 3C Low-Grade Serous Ovarian Cancer.

To be told this at age 21 was a complete shock. Kristen had no risk factors or family history relating to cancer. We were also horrified to learn that there was no screening test for this cancer. It meant her routine pap-smear exams, as well as her Gardasil vaccinations had no bearing at all.

We learned that the cancer had spread well beyond her ovaries and womb, throughout her large bowel and abdomen up to her diaphragm and liver and that it was unlikely that Kristen would survive.

Facing this news, Kristen was determined to do everything she could to stop this cancer from taking her life. She endured an 11 hour operation and months of chemotherapy. For a little while, Kristen was cancer free. However like the majority of women with Ovarian Cancer, it came back and was then deemed incurable. For six years, Kristen tried just about every available treatment including more surgeries and clinical trials.

With each new treatment regime, Kristen knew that her time here on earth would be short and it was important to make her life count. Kristen found meaning by tirelessly volunteering her time to share her story to raise awareness and funds for Ovarian Cancer. She wanted people to be aware that there is no screening test and to know the signs and symptoms. She was also extremely passionate about raising funds for research and promoting clinical trials participation.

I am so proud of my sister and the person she was. Kristen somehow managed to turn the darkest of times into something positive and to help others. She became an advocate and role model in the Ovarian Cancer community, proudly wearing teal from head to toe.

As Kristen’s caregiver, we were able to navigate her diagnosis, treatments, and advocacy adventures side by side. We volunteered our time with Kristen guest speaking at over fifty fundraising events, symposiums and media engagements. We also ticked off our travel buck list, attending eleven Australian and international conferences between 2015 and 2019. We connected with a network of “teal sisters” who truly gave us a sense of community in this “teal tribe”.

As a result of our involvement with the USA and Canadian charity sector, Kristen was instrumental in bringing the US program Survivors Teaching Students (STS) to Australia and became the Brisbane Regional Coordinator. She even recruited and trained me up to become a presenter too. For anyone interested in the program, I can promise it is such a rewarding and empowering experience.

In 2018, Kristen’s submission for ‘Ovarshare’ won her the nation-wide podcast competition Podquest. Produced by Nova Entertainment, Kristen created her own six-episode podcast series where she interviews young women with ovarian cancer to raise awareness of the disease and its symptoms. The series also features interviews with leading professionals in the field- including an oncologist, gynaecological oncology surgeon, psychotherapist and a USA based ovarian cancer charity.

On one of our trips to Washington D.C for the OCRA Survivors Conference, we also participated in political advocacy training. Kristen addressed political leaders at Capitol Hill speaking about her personal cancer fight and requesting increased funding for ovarian cancer. This experience inspired us to lobby the Australian government with Ovarian Cancer Australia. In February 2019, Kristen addressed Australia's political leaders, speaking at Ovarian Cancer Australia’s Annual Parliamentary Breakfast to mark ovarian cancer awareness month. Kristen was instrumental in gaining $35 million in government funding going towards ovarian cancer prevention, early detection, treatments and clinical trials.

It was incredible to witness the effect that that morning had on our nation’s policy makers. Following on from her address, we became involved with the 2019 federal election campaign for the Australian Labor Party. We advocated for their Cancer Care Package and Kristen spoke on national television and press conferences. Kristen used this opportunity to further raise the profile of ovarian cancer on a national level.

It is humbling to reflect upon the impact Kristen made by sharing her story. As the face of many campaigns and fundraisers, Kristen appeared across television, print, radio and online media with her story collectively raising millions of dollars benefiting cancer charities. Kristen's extensive volunteer efforts were recognised as a Young Australian of the Year 2019 finalist for Queensland.

It was surreal to see ourselves on billboards promoting the first Bonds ‘Overies for Ovaries’ campaign. There were so many opportunities and adventures that unfolded over the 6 years that we never dreamed possible at the start of Kristen’s diagnosis in 2013. Kristen was a young 21 year-old girl with an adventurous spirit, just starting out at life with the world at her feet.

Kristen’s wish was that her story could live on and continue to make a difference to ovarian cancer awareness and research, even after her death. Shortly before she passed in December 2019, Kristen established a fundraising page called ‘Kristen’s Living Legacy’ to inspire others to donate and continue fundraising in her honour.

We never can fully comprehend the effect that our story has on others, the potential to inspire and incite change. The power of our voices is something not to be underestimated and collectively, we the “teal tribe” will continue to contribute to the outcomes of women with Ovarian Cancer. Despite Kristen’s passing, I hold her close by my side and her story lives on to impact and inspire.