When Grace was three, she was initially diagnosed with a rare type of leukaemia. Three months into her intensive treatment, her diagnosis was corrected to acute lymphocytic leukaemia – a type of cancer where the bone marrow makes too many immature white blood cells.
While it too is considered rare, it is the most common form of cancer affecting children. Grace’s disease also presented with tumours, putting her in a high-risk category.
The toddler was prescribed a two and a half year course of oral and intravenous chemotherapy with regular lumbar punctures; where chemo drugs are injected into spinal fluid under general anaesthetic.
Right now, five-year-old Grace’s health is more at risk from the powerful therapy than the disease itself so she’s been prescribed half of the scheduled regime of meds.
The side effects Grace has suffered would force an adult to take to their bed. Constipation, incontinence, leg pain, headaches, non-diabetic hypoglycemia, avascular necrosis, peripheral neuropathy, the list goes on. She even needs to be fed through a nasogastric tube. Her feeding solution hangs from a child-sized IV pole that she wheels around.
Grace’s mum, Catherine knows that medical research holds the key.
“The treatment provided to Grace saved her life, but there is definitely a lot of room for improvement to reduce the horrendous side effects,” said Catherine. “New kinder drugs are required. Science and proven complimentary therapies need to work together.”
“Children with cancer need an integrated approach to their care, that’s why we’ve adopted a holistic method to our distribution of funds,” said Owen Finegan, CEO of The Kids’ Cancer Project.
“Research is helping more children survive and live with cancer,” he said. “However, diagnosis and treatment significantly disrupts their education, which profoundly impacts their social and academic skill development."
Kids like Grace not only need better treatments, quality of life is important too.
Despite her low immunity, the fact she wears a nappy and is hooked up to an IV pole, little Grace is one of the lucky ones. She has started school and loves it more than anything.
“Going to school means everything to Grace,” said Catherine. “She doesn’t like weekends and she certainly doesn’t like school holidays. She makes up a calendar counting the sleeps until school starts again."
“Many kids can’t go to school when they need so much care,” continued Catherine. “We’re so fortunate Grace’s school allows me to go with her every day. I just sit in the background and tend to her needs as they come up. Grace’s entire school community is supportive. Especially her teachers.”
Last year, on Grace’s first day of kindy she arrived bold, bald and ready to answer any questions thrown her way. Her teacher had prepared the children but, more importantly, their mums and dads.
“Her teacher, Mrs Wignell, spoke at an event held for all the parents explaining the situation. She got everyone to imagine if it was their child in Grace’s situation. She emphasized why they should never send their kids to school if they are unwell and how important it is not to spread bugs."
“Without her, I wouldn’t have had the courage to send Grace to school. Mrs Wignell made me feel that Grace was coming into a safe environment where she would be supported 100 per cent.”
Unfortunately, not every school has a Mrs Wignell.
Children and adolescents often have a strong desire to go back to doing normal things, like going to school, shortly after intensive treatment. However fatigue, foggy thinking and days away from the classroom can be real barriers to successful reintegration.
Dr Joanna Fardell, Deputy Program Leader, Behavioural Sciences Unit, Kids Cancer Centre at Sydney Children’s Hospital, Randwick, and Postdoctoral Research Fellow for The Kids’ Cancer Project, is developing a comprehensive national online support program called Ready, Steady, School for children living with cancer.
“Grace’s experience is similar to what we’ve heard from many other families,” Dr Fardell said. “Her story is particularly close to my heart as we chose to name our baby girl Grace. It’s such a beautiful name, and together with becoming a parent for the first time earlier this year I think this holds even more meaning for me.”
Ready, Steady, School was initiated through findings that children with cancer who had supportive teachers and a supportive school environment were happier and more motivated than kids who weren’t given the same support.
“We spoke to parents and a range of health professionals,” Dr Fardell said. “And discovered we could really help Australian children with cancer, along with their families, by ensuring their school was engaged and informed.”
The program has been created on the solid foundation of extensive research. The output will be a website that enables parents, students and education professionals to share information and resources.
“We’ve also developed a structured needs assessment to ensure parents, children and teachers are directed to tailored information, activities and practical resources for each child,” said Dr Fardell.
“Grace told me that if she couldn’t go to school, she’d be really, really sad,” Catherine said.
“School keeps her stimulated both artistically and mentally. Plus, it gives her a social life. I couldn’t give her all of that at home. I believe the joy school brings her has helped her through treatment and has helped maintain her positive outlook, especially when she is feeling unwell. It gives her something to look forward to.”
“Grace has spent so much time with adults because of her illness,” said Catherine. “Sometimes she can find it hard to just be a child, although she is learning.”