A Journey of Two Decades: Part Three

Sadly, in August 2002, after almost 6 years, Stephen lost his battle with this disease.

It was very difficult for us all to come to terms with losing Stephen and accepting that he was unable to be cured.

Stephen’s initial treatment protocol (Study 6) was later determined to have a 5-year survival rate of only 60%. In early 1997, only a few months after Stephen was initially diagnosed with ALL, children were enrolled on to Study 7, which would prove to result in an 85% success rate.

The success rates of subsequent protocols for ALL have increased so that now very few children die of this disease. I can’t help but wonder how Stephen’s journey might have evolved had he been on a later protocol.

In 2004, KOALA was established as KOALA Foundation, with Tony McGinn OAM as the President. I was invited to join him on the Board to offer the knowledge I had gained over the 6 years navigating the system at MMC and then at the RCH. I felt that such experience could inform action and advocacy for childhood cancer.

I also thought of it as a legacy to my beautiful boy.

In 2012, KOALA Foundation (founded by parents from Monash Children’s Hospital) merged with the Children’s Cancer Centre Foundation (founded by parents from The Royal Children’s Hospital).  

Today, the Children’s Cancer Foundation draws on the experience of its highly skilled board of directors, with four directors being parents of children diagnosed with cancer, and one director being a childhood cancer survivor. The board has proven exceptional at influencing decision-making at hospital executive and government levels.

In 2005, The Million Dollar Lunch was launched and began to raise significant funds for the charity. I am proud to have volunteered 12 times at The Million Dollar Lunch. My daughter, Carly began volunteering, as she understood how this source of funding helped improve treatment outcomes for children with cancer, like her brother. As a marketing graduate, she was delighted to accept a 6-month contract to work on The Million Dollar Lunch 2016. I know there were reminders of Stephen and his journey during this time.

It has been almost 18 years since I started supporting this charity. In that time I have read and heard impact stories from patients, their parents and staff members; stories of clinical trial successes, improved quality of life through clinical care programs, such as Art and Music Therapy, and diminished time spent in hospital as a result of the Foundation funding clinical staff at the hospitals. 

I continue to be involved with the Children’s Cancer Foundation as a director, and member of the Grants Committee, because I am proud of all of its achievements.

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