Summah’s cancer diagnosis and treatment was a journey containing many frightening episodes for her family, but four years on you would never know it as she looks and feels so good that many new high schools friends have no idea she was even sick, and she is bursting with enthusiasm about a trip to Uluru through Make a Wish.

At first, it was hard to find answers for Summah's problems. Waking up through the night with leg pain, at nine years-old, was put down to being caused by a gymnastics injury due to the dynamic nature of her training.

“It was like a stabbing pain from my hip to my knees,” said Summah. “It felt more intense at night because I was lying still.”

But then the pain increased to the point where she couldn’t sit on the floor and cross her legs anymore at school. Initially Summah had ultrasounds and X-rays to test for an injury arising from the physical demands of gymnastics and later tests were conducted for juvenile arthritis.

“At night time she would wake up and cry,” recalled her mother, Melanie Russell, “and this became so intense that I demanded the GP look further into it, because it was affecting her sleep severely, so he did a blood test.”

The blood test came back unusual and the GP suggested that Summah see a paediatrician. Unfortunately, it was the end of November and the earliest appointment she could get was in January. Summah’s symptoms had intensified by this stage, though, and she went from loving sport and school to becoming lethargic, unable to do anything, and wanting to sleep all the time.

“I just woke up one morning and took her to Mount Druitt Hospital,” said Melanie. “They did one more blood test there and asked me to come back the next day for a follow up, but then called me two hours later, told me to bring her back immediately, and that she needed to be admitted.”

Within the space of five hours Summah was transported to The Children’s Hospital at Westmead, placed in Emergency, and she had her central line put in the very next morning. Her treatment for acute lymphoblastic leukaemia (ALL) started right away in November 2015.

After having chemotherapy through an IV for eight months, her treatment changed to tablets for another eight months, before changing back to an IV due to problems she was experiencing with her liver from the tablets. Weakened bones were another problem Summah faced with multiple broken bones occurring as a consequence of her treatment. She tripped over someone’s foot at school breaking her arm, broke her foot kicking a football, and also broke her arm during a Colour Run charity event when someone tripped over her. Her bones are still a bit brittle, and are monitored each year, but it is expected they will redevelop.

Some experiences her daughter endured were terrifying, remembers her mother.

“The most scary thing that happened was she had a reaction to one of the medications that made her very sick and caused her to have seizures. She also lost her vision and couldn’t speak. It was scary.”

After a day or so Summah’s vision and speech returned, but a hospital stay that was originally planned for two days extended into five weeks as her body was unable to excrete the chemicals.

Other complications included contracting a debilitating form of pneumonia that was so unusual the hospital had not had a case of it for ten years, requiring a stay of six weeks. As if this wasn’t enough, the same time she was battling pneumonia she was also coping with chemically induced hepatitis that completely altered her treatment plan.

It was hard for her younger sister, Charlotte, to adjust to Summah’s continual absences. “She used to be really sad when she’d go to bed and Summah was there and she’d wake up in the morning and Summah was gone,” said Melanie. “That’s the hard part, trying to balance yourself, with me and my husband, Corey, being in two places at once. But we were lucky, we had really good family and friends that used to look after us and the nurses were fabulous. They become our second family.”

At the end of Summah’s treatment in December 2017, when the last bone marrow came back clear, everyone was expecting the good news as she’d been responding extremely well to her cancer management. Since this time, she’s been back every three months for check-ups, a process that continues for five years after her treatment was completed.

Amazingly, Summah moved quickly on from her illness and straight into the routine of high school in January 2018 without missing a beat.

“Her life is pretty much back to normal,” said her mother.

Something beautiful that developed from those tough hospital visits was an enduring friendship with Grace who was just eight months old when they first met. Inseparable, they would have chemotherapy lying in bed together, and Grace would often cry to be allowed to be with Summah. She is now 4 years old, finished her treatment, and their families regularly see each other. Two girls that were once confined to hospital beds are now quad biking together and living full lives.

Putting a brilliant smile on Summah’s face is the news that the Make a Wish charity is sending her to Uluru. “I’ve seen pictures of it and wanted to go to it,” said Summah. She has wanted to see Uluru for a long time, after being exposed to Aboriginal art during NAIDOC week while in hospital, and creating art based on Aboriginal themes as a patient. There is so much to look forward to now her illness is behind her.

ALL is the most common childhood cancer. Find out more about it.

This short video about ALL describes it in a way that is easy for young patients to understand.