At just seven months, Evelyn Tuckerman was diagnosed with an extremely rare and aggressive form of bone cancer called Ewing sarcoma.
The disease usually affects teenage boys and is most commonly found in a limb.
It is so aggressive that doctors usually decide to amputate the affected area.
But Evelyn’s cancer was found in her spine, and the day she was diagnosed, she became paralysed.
She started a journey that her mother Billie Tuckerman has described as going to “hell and back” — especially for Evelyn, but also for her family.
“It’s one of those cancers that they throw everything at,” Ms Tuckerman said.
“We’ve pretty much done everything we can to save her.”
Evelyn, who is from Adelaide, went through 18 rounds of fortnightly chemotherapy, countless blood transfusions and travelled to the United States to get specialised treatment.
At two-and-a-half-years-old, she had been under general anaesthetic more than 60 times — a number so high that doctors had to start using different sedatives because her body had become accustomed to the drugs.
“Evelyn had to go under general anaesthesia everyday for 28 cycles,” Ms Tuckerman said.
“It was so gruelling; she didn’t put on any weight on for six months.”
The most unlikely neighbour
Ewing sarcoma makes up just 1 per cent of childhood cancers, with only two to three cases diagnosed in every million people.
For it to be found in the spine was even rarer, with Evelyn’s oncologists saying there was only one other case in the country.
Incredibly, that second case turned out to be a 12-year-old girl named Sophie, who lived just a few streets away from the Tuckermans.
The two families formed a close relationship.
Evelyn’s nine-year-old brother Edward became close friends with Sophie and the family saw her as a beacon of hope.
“Edward and Sophie actually became pen pals and would quite often leave each other letters in each other’s letter boxes,” Ms Tuckerman said.
Edward watched as his new friend Sophie celebrated the end of treatment — only for the insidious disease to return.
Three months after finishing her treatment, Sophie relapsed and tragically died last year, aged 13.
“She was kind, she was loving … she had a wish for me — she left me all of her LEGO,” Edward said.
“We lost a really, really close friend and we grieved with them as well through the process,” Ms Tuckerman said.
The Tuckermans said the last few years had been trying for Edward, who “absolutely adores” his sister and fears she could be “ripped away”.
“He’s really grown up so quickly, he’s gone through stuff grown people haven’t had to go through,” his father William Tuckerman said.
“I honestly think that [siblings] are a little bit of the silent warrior in this battle,” Ms Tuckerman said.
Support for families critical
Siblings of children with cancer often experience emotions such as sadness, fear, anxiety, resentment, anger, jealousy, and guilt, according to the Cancer Council.
The organisation advises parents to remind siblings that they are loved and supported, and that they did not cause their sister’s or brother’s cancer.
Maria Scicchitano, a family therapist at the Women’s and Children’s Hospital in Adelaide, said it was important that families were offered therapeutic support when managing a serious diagnosis.
“I think childhood cancer or any illness really can turn a family’s life upside down,” she said.
“For siblings, it could be worry — worry about mum and dad, worry about their sibling, their brother or their sister, worrying about what to tell their friends — so it has enormous impact.
“The family is often the best resource for the child or the adolescent. And so you want to really get everyone involved in thinking about the dilemma or thinking about the issue and offering them support.”
Ms Scicchitano uses talk and play therapy to help children and families process and unpack their emotions.
“Using the medium of play and drawing [can] help them express, in a developmentally appropriate way, their feelings,” she said.
For Edward, having access to sessions with a family therapist has been beneficial.
“Board games, drawing, even just talking to her makes me feel relaxed and she’s just helped me so much,” he said.
Ms Tuckerman has also noticed the difference.
“Through it all, Edward has probably been the strongest out of the four of us,” Ms Tuckerman said.
“He’s kept us going. He’s kept us smiling [and] he’s just been the best friend to all of us.
“He reminds us why we’re a family.”
Back on her feet but still battling
The Tuckermans’ journey took a positive turn almost 18 months ago when doctors declared Evelyn was cancer-free.
In what her mother has described as a “miracle”, Evelyn is not only back on her feet, but is walking and dancing.
Despite the medical optimism, Evelyn’s future remains uncertain.
“Statistically, Evelyn won’t make her fifth birthday, but we just have to hope she can beat the statistics,” Ms Tuckerman said.
“I don’t want to lose Evelyn,” she said, while holding back tears.
Right now, quality time together is the priority for the Tuckerman family.
“I have learnt to realise that the housework can wait,” Ms Tuckerman said.
“I have to appreciate every milestone in her life, no matter how big or small.”
