For the past 4 years, Kylie has made a point of enjoying every minute with her soul mate and husband, Nick, precious Golden Retriever, Bailey, family and friends. Her desire to spend time, more meaningfully, with loved ones was brought about by a cancer diagnosis that rocked her entire family.
In May 2003, Kylie found out she had locally advanced Non Small Cell Lung Cancer. Kylie was a healthy non-smoking 27 year old professional who had dreams and plans - a career, marriage, and children. “I was scared, but wanted to leave no stone unturned to fight the cancer”.
Months of treatment followed, and with it, the rollercoaster of emotions came in ebbs and flows. Kylie experienced daily radiation, chemotherapy, surgery, more chemotherapy; then fortunately she was offered a newly developed targeted treatment. Kylie says she and her husband were open to trying something different, after hearing the cancer was no longer curable. “I wouldn't hesitate to be part of a trial or try new medications, as long as the benefits outweighed the risks - you just don't know what might work, or give you a good quality of life”.
This new targeted treatment gave Kylie two and half years with stabilized disease and an excellent quality of life. Despite a recurrence of the lung cancer in 2006, Kylie had a determined outlook and continued to fight for her life with the help of her dedicated Oncologist and medical team. More recently, she continued with another targeted treatment, which again stabilised the disease. Kylie, however, was careful to point out, “I know lung cancer is a complex disease, you have to be two steps ahead of it - I am hopeful that with the advancement in new treatments that it will one day become more like a chronic disease”.
Living with a diagnosis like this had made some definite changes to Kylie's life. Kylie and Nick were married in July 2004, she celebrated her 30 th birthday together with her family and nine nieces and nephews, traveled to Europe in 2007, and together with Nick's support, Kylie had become involved in studying treatment options, and advocating for better lung cancer patient support, hope, and research.
Sadly, on 9 th November 2007 – National Lung Cancer Awareness Day, Kylie Johnston, champion and founder of the Kylie Johnston Lung Cancer Network, passed away after her four and a half year fight to survive lung cancer. Family and loved ones surrounded her at the time of her death.
In mid 2006, Kylie and her husband Nick took part in a challenge to raise awareness and funding for lung cancer - this was a hot air balloon ride over the Simpson Desert . Kylie rose to the occasion and with all her heart and might, achieved success. Not only were awareness and funds raised, but Kylie, during this journey, became a great source of inspiration to a great many Australians.
Following are some words from other patients and carers whose lives, Kylie touched:
“Kylie's memory will live on and more importantly through her enthusiasm and drive, others will be helped”
“She was an inspiration for a lot of us dealing with or having dealt with lung cancer”
“I received emails from Kylie offering so much support and assistance and this I will never forget”.
We were all privileged to know Kylie and to work with her to create this Network. She has left us with a wonderful legacy.
On behalf of The Australian Lung Foundation and the Kylie Johnston Lung Cancer Network, we offer Nick and the Schofer and Johnston families our sincere condolences.
It was during her initial treatment that Kylie and Nick experienced first hand the need for increased support for lung cancer patients and became determined to help others in her situation.
In 2007, The Australian Lung Foundation announced a new initiative - the Kylie Johnston Lung Cancer Network. Kylie's dream and vision of providing dedicated support, hope and understanding for Australian lung cancer patients, their families, and carers has become a reality.
To ensure that Kylie made a difference, your donations are welcomed.
For the past 4 years, Kylie has made a point of enjoying every minute with her soul mate and husband, Nick, precious Golden Retriever, Bailey, family and friends. Her desire to spend time, more meaningfully, with loved ones was brought about by a cancer diagnosis that rocked her entire family. 
