A mother’s strength and daughter’s determination: a neuroblastoma childhood cancer story
When a sore tummy signals something more serious
When Sheila's three-year-old daughter, Maya, began frequently complaining about a sore tummy, Sheila never imagined the cause of Maya's pain would be cancer. Now a teenager, Maya has been cancer-free for 11 years, but the treatments that saved her life have left her with lifelong chronic health issues.
The shocking diagnosis of a rare cancer
When Maya began to show signs of being unwell, their family GP suspected that Maya might have an infection. While they waited for the test results, Maya became more withdrawn, eventually refusing to walk. Her parents took her to the Royal Children's Hospital emergency department, where she was admitted for further tests. Three days later, the cause of Maya’s pain was discovered.
Maya was diagnosed with stage 4 high-risk neuroblastoma—a rare and aggressive cancer that develops from immature nerve cells. In Maya’s case, she had a large tumour in her abdomen, and the cancer had spread throughout her body.
Sheila vividly recalls the moment she was told Maya had cancer.
"It was a complete shock to hear that Maya had a cancer we had never heard of - neuroblastoma - and there was no time to process this information as everything happened so quickly. It was heartbreaking to try to explain to a young child what was happening; going from a healthy, social, and happy child to suddenly being hospitalised and bombarded with multiple blood tests, scans, biopsies, and surgery.”
Toxic treatments on a tiny child have devastating consequences
The treatment journey that followed was gruelling and relentless, involving chemotherapy, surgery, a stem cell transplant, radiation therapy and immunotherapy. These toxic treatments killed the cancer, but at the same time, caused devastating impacts on Maya's tiny body that would have lifelong effects.
"Maya experienced hearing loss, growth development complications, and several gut issues along with bowel obstructions that led to multiple surgeries, and she was dependent on intravenous feeding for six months. But what was truly upsetting was that Maya's 'new normal' became that of a sick child, as she didn't know any different. Maya had to rediscover what it meant to be a child and how to form friendships, all while dealing with a hearing impairment, nasogastric tube feeding for 12 hours daily, and schooling interruptions due to regular hospital visits."
Although her cancer treatment was successful, Maya has experienced continual health setbacks and, in 2023, spent three months back in the Royal Children’s Hospital as her gut condition worsened and required more surgery. After living many years following her cancer treatment without a central venous catheter in her chest, she once again had another central line inserted so she could receive intravenous nutrition and medicine. This has introduced new complications and restrictions on her life.
Yearning to be an independent, pain-free teenager
Now a vibrant 15-year-old with a sparkling personality, Maya dreams of a performing arts career, loves school and has a supportive group of friends. However, Maya’s positive attitude masks the daily challenges she faces.
"I wish I didn't have to worry about flare-ups of my gut condition, which often causes pain at the most inconvenient times, like when I'm performing on stage or sitting exams at school."
However, Maya's greatest wish is to be independent and not reliant on Sheila to manage her daily health care. She also looks forward to the day her central venous catheter is removed.
"I love swimming and going to the beach with my friends, but I can't do that now with my central line. I can’t wait until I no longer need nutrition support."
Denied the chance to conceive a family
It's not only Maya's daily health issues that concern Sheila; it's also the future implications of Maya's cancer treatment. Maya didn't have the opportunity to undergo fertility preservation before her cancer treatment, so conceiving a biological child of her own will never be an option.
"When your child is going through cancer treatment, all you think about is saving them, regardless of how harsh the treatments are. You don't consider or are not aware of the lasting impacts these treatments might have on your child, or how they will affect the family."
Becoming a voice for other childhood cancer survivors
With the experience of Maya's tumultuous cancer journey and ongoing health issues, Sheila has emerged as a strong advocate for survivorship issues. She wants to paint a realistic picture of the enduring struggles faced by childhood cancer survivors and their families.
"It's important that we don't forget about the childhood cancer survivors who now have lifelong chronic health, psychological and social issues. By contributing to the Children's Cancer CoLab's Patient and Family Advisory Committee, I'm ensuring the voices of young childhood cancer survivors, like Maya, are heard by those who can positively impact their lives through medical research."
A motivational message for people working on childhood cancer
Sheila's message to researchers and clinicians working on childhood cancer is clear: "Keep pushing for discoveries and remember the children you are working to help because they deserve a better life."
Maya echoed this message: "My life would be so different if there were safer therapies with fewer side effects when I was being treated for cancer. So please keep going because your breakthroughs could make a huge difference to kids with cancer."
Although Maya's health issues are constant reminders of her cancer journey, she is determined to live her life to the fullest and help others who have experienced childhood cancer. Combined with Sheila's fierce determination to raise awareness about the realities of childhood cancer and the need for more research and support, they are a powerful team representing the voices of Australian childhood cancer survivors.
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