A month shy of her fifth birthday in 1972, Michele suddenly lost her appetite. Soon after, her mother noticed a lump the size of a fist on the right side of her abdomen. Overnight, it swelled to the size of a football. This was the unexpected beginning to Michele’s 50-year journey of cancer survival.

Michele was rushed to Prince of Wales Children’s Hospital (POWCH), now Sydney Children’s Hospital, Randwick (SCH), where testing revealed she had a Wilms’ Tumour. Also known as nephroblastoma, Wilms’ Tumour is the most prevalent form of kidney cancer in children and most commonly occurs in those under five years of age.

Michele was admitted to POWCH under the care of the late Associate Professor Darcy O’Gorman Hughes, one of the founders of the Children’s Cancer Institute of Australia.

Michele underwent chemotherapy to shrink the tumour before undergoing surgery to remove the tumour, along with her right kidney. Weighing more than two kilograms, the tumour was described by doctors as the size of a pumpkin.

“Coming out of surgery, Michele looked at me and said, “my tummy is better.” She had a smile on her face, and all I could feel was amazement at her bravery,” Michele’s mum, Mary, said.

Sadly, the cancer had spread beyond Michele’s kidney, and she needed a further two years of chemotherapy and a six-week course of radiation before doctors confirmed she was in the clear.

More than 50 years on, Michele still remembers the difficulty of the experience.

“I started my first year of school while undergoing chemotherapy and having had lost my hair. I wore a wig which unfortunately got pulled off by other children. I also had my own vomit bucket as I endured endless bouts of vomiting due to the chemotherapy, which I had to clean myself,” Michele said.

In 1974, Michele completed her treatment, but a cancer patient’s journey does not end there. She went on to attend quarterly follow-up appointments for the next five years and later transitioned to the Late Effects and Survivorship Program run by the Kids Cancer Centre at the newly renamed SCH.

This nurse-led program, supported by Sydney Children's Hospitals Foundation and the generosity of donors, cares for paediatric cancer patients into adulthood, aiming to enhance the quality life of survivors and improve mortality rates for all cancers, through monitoring for therapy related toxicity, optimising mental health, equipping childhood cancer survivors with the knowledge they need and minimising late effects by promoting healthy lifestyle choices and prevention strategies.

“The Survivorship Clinic and our research into the late effects of cancer and its treatment improves the quality of life of survivors and benefits the next generation of childhood cancer patients, as we modify treatments based on what we learn from survivors,” Prof Richard Cohn, Director of Late Effects and Survivorship Program, said.

If Michele were diagnosed today, she would be treated with considerably less toxic therapy and experience far fewer side-effects, with an excellent chance of cure.”

In 1990, Michele was unfortunately diagnosed with cervical cancer. She required surgery and faced the possibility of not being able to have children. Incredibly, her resilience once again shone through, with Michele not only reaching remission but also giving birth to two healthy babies, Sean and Madelaine. But it wasn’t without side effects.

Through the monthly Long Term Follow Up Clinic at SCH Michele was diagnosed with scoliosis/kyphoscoliosis, right-sided muscle wasting, underdeveloped and rotated right hip and pelvis, underdeveloped right rib cage, and asymmetry from her chest area to her pelvis.

“I have faced some scary health issues related to late effects. My daily life is a constant battle with the asymmetry of my body causing back, hip and leg problems,” Michele said.

These side effects also impacted Michele emotionally and psychologically, but she attributes the support of the Survivorship program with helping her get through this.

"The support from the KCC and SCH has been extremely important to my ongoing health. Karen Johnston has been an integral part of my healthcare for what seems like a lifetime. She has so much passion and dedication to cancer survivorship and has kept me informed, supported, and empowered to be responsible and advocate for my own healthcare.”

Karen said Michele is a great example of how to navigate survivorship of childhood cancer.

“Michele comes to clinic regularly and attends to all recommendations and advice we give her. She works in partnership with her general practitioner, is a great self-advocate, has excellent health literacy, and knowledge of her history and potential side effects of her treatment,” Karen said.

“Although Michele has experienced some of the predicted long-term side effects of her treatment, she manages them well and is excelling at life.”

In her thirties and forties, Michele attended various Survivorship seminars presented by KCC. The seminars provide updates on the breakthroughs being made in childhood cancer around the world and a platform for long-term survivors like Michele to share their stories. It is a day of hope for all who attend.

Michele said they have not only provided her with valuable health information but also promote the need for survivors to be advocates for their own health care.

“These seminars have empowered me to start to speak up. I have become more confident talking about my issues,” Michele said.

“Over the years, I feel that the benefit has been mutual. I am still learning about the risks that I may face as a consequence of the treatment I received so many years ago, while the LTFU clinics have been able to learn and modify treatments from observing the side effects of patients like me.”

Michele marked 50-years of survival in 2022 and despite the hardships over this time, her life has been full of colour.

She has worked in the Pharmacy Department at Camden Hospital for almost 26 years and also works with young adults living with disability. She enjoys road trips with her husband, John, and baking fruit cakes, which have awarded first place in the Camden show in recent years.

Michele and John are celebrating their 35^th wedding anniversary this month and she is now a proud grandmother to two-year-old Logan and nine-month-old Jamie.

“I think having childhood cancer definitely shaped the person I am today,” Michele said.

Living and enjoying what life has to offer will always be my priority. My advice to other survivors is while cancer, treatment and late effects will be part of your life, don’t let it rule your life. Advocate for yourself and enjoy life.”

September is Childhood Cancer Awareness Month and is a time to celebrate those who have beaten childhood cancer, like Michele, recognise the bravery of those currently undergoing treatment, honour the children who have sadly lost their lives and reinforce our commitment to doing everything possible to find a cure and enhance the quality of life for survivors.