Rebuilding what illness takes away

Rebuilding what illness takes away A childhood cancer battle led this scientist into a career helping kids like herself.

A childhood cancer battle led Clarissa Schilstra to a career focussed on improving social and educational outcomes for kids with cancer.

Clarissa Schilstra has no memory of her first cancer battle, such was the tenderness of her age, but her second looms large in her mind.

She was 13 years old and had been experiencing flu-like symptoms of tiredness and fevers for a few weeks, when her GP recommended she go to the hospital for further testing to understand what could be going on. While preparing to undergo some other diagnostic procedures, she received the news.

Clarissa Schilstra was 13 when she found out she had cancer for the second time in her life.
As she was being prepared for the procedures with her parents by her side, a doctor rushed in with results from a recent test. She had leukaemia, the doctor said. Clarissa witnessed her parents literally collapse under the weight of their sadness.

“They basically sank to the ground and were crying,” she recalled. “I was lying there on the table and couldn’t get up. I couldn’t hug them. It was quite shocking. I was aware of what it would mean for my parents and for my brother. So, as a 13-year-old, I felt compelled to be strong and to not get emotional about it, to protect them.”

It was the beginning of a long period of medical care that would force her to become a more mature person, to become older and wiser before her time.
Clarissa’s medical experiences, which began with a cancer diagnosis as a two-year-old and led to her spending around a third of her childhood and teenage years in hospital, have shaped the person she is today.

This includes her authoring a book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, and a blog for young people with cancer

Clarissa has published a book to help teens and young people diagnosed with cancer.


Now Clarissa works as a researcher on major studies intended to provide better social, educational and emotional outcomes for youngsters who are diagnosed with cancer. She has recently been accepted into a PhD program at UNSW, through which she plans to continue this work.

Growing up quickly

Much of the research focus nowadays around children’s recovery from serious illness is on catching up with lost studies. It’s about how to make up for time that could have been spent in school but instead was spent in hospital.
But 24-year-old Clarissa says the repercussions of a cancer diagnosis travel far deeper than that.

“From my personal experience, the real damage comes not from the lessons missed but instead from the isolation,” Clarissa said. “The isolation leads to disconnection from friends. At the same time, you’re isolated in an environment where you’re surrounded by adults.”

“All of my nurses were 20 to 30-year-olds. I was around all of these adults, so I found myself taking part in much more mature conversations than I would have with other 13-year-olds. Because of that, you change your entire conversation style and the types of things you like to talk about.”

As a result, when she returned to school and heard, for instance, girls complaining about fashion or boyfriends or parties, etc., she found the situation quite jarring and frustrating.
“They feel like very petty complaints compared to this massive, life-changing experience you just had,” Clarissa says. “That shift I had to make, that regression to my actual age, was very difficult.”

New solutions for old problems

Clarissa’s working days are now spent conducting research in the Behavioural Sciences Unit, part of the Kids Cancer Centre at Sydney Children’s Hospital and also a part of the School of Women’s and Children’s Health at the University of NSW.

“I’m part of the education and cognition team,” she explained. “We’re running two studies right now. One that I manage is called ‘Reconnect’. It looks at the social wellbeing and social outcomes of childhood cancer survivors. It investigates things like the children’s experience of bullying, their social competency after treatment, their family functioning. In general it aims to understand whether or not treatment affects their ability to have healthy social interactions and to relate to family, etc.”

Clarissa was isolated during her high-school years while she underwent treatment for leukaemia.

The second project is called Ready Steady School and is funded by The Kids’ Cancer Project.

Read more: Ready, Steady, School.

“That’s a really neat project,” she said. “It’s basically a website our team is developing to better facilitate the transition back to school for children and adolescents with cancer and the families and teachers who are supporting them."

"It aims to provide children and adolescents, their families, and their teachers with information about how cancer treatment affects education and cognition, and provides practical resources to help them navigate the child’s ongoing education. For example, helping keep children connected to school during treatment, who they can reach out to for support, tips for how busy teachers can support them, what parents can to do to help facilitate that process and more.”

“For me, everything has come full circle. These projects are addressing the very issues that I struggled with. It is immensely fulfilling for me to be able to be part of them.”
Hero image credit James Brickwood and Fairfax Media Syndication.Words: Chris Sheedy.

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