The parents of an Australian toddler battling brain cancer have recalled the heartbreaking moment they discovered he had the disease, as they struggled to raise enough money for his life-saving treatment.
Kealii, the youngest of the three children of Darwin couple Dennis Jevdenijevic and Zoe Connell, was diagnosed with brain cancer at the end of last year.
Despite having undergone a miracle operation to completely remove the tumor, there is still a very high risk of Kealii’s cancer coming back.
His parents were told there is one treatment option that could give their son a cancer-free childhood, but they only have three weeks to raise the money for it.
The couple recalled the first moment that indicated something was wrong with little Kealii on December 17, 2023, when he was just 16 months old.
Darwin toddler Kealii Jevdenijevic (pictured) underwent surgery on January 23 to remove a tumor wrapped around his brain stem
“Kealii was playing in an indoor playground and had an episode that left him unable to walk, stand or control a whole side of his body,” Ms Connell wrote on social media.
‘He became limp, super sweaty and couldn’t talk. We thought he would be okay with some cuddles and sitting, but he didn’t.”
Doctors thought Kealii may have suffered a seizure, so kept him in the Royal Darwin Hospital overnight.
“The next day Kealii had a kink in the left side of his neck, when he walked he started leaning to the left side and when he stood up quickly he almost fell over and had to slow down,” Ms Connell said.
Kealii was referred for an emergency MRI on January 12. The test showed that the toddler had brain cancer.
“Dennis and I sat down in a little waiting area and (our pediatrician) came in with another pediatrician. She asked us to come to another room that was a little more private,” Ms Connell said.
“As soon as she said my heart sank, I knew something was wrong.
‘I remember the words clear as day: “I told you during your appointment that if anything was wrong, someone would tell you right away, I’m so sorry, but we did find something and Kealii has a brain tumor” .
‘I burst into tears, my heart broke. I felt like someone had just shot me straight in the chest, I wanted to throw up, my whole body started shaking and went into shock.”
Although the surgery was successful, there is a very good chance that Kealii’s (middle) cancer will return due to his type of tumor
The family was told to immediately rush to Queensland Children’s Hospital for ‘hope for surgical intervention’.
“Zoe and I were told that the tumor had wrapped around Kealii’s brain stem and descended into his spinal cord,” Mr Jevdenijevic explained in a post to a Gofundme page.
‘Because the tumor was close to his brain stem, there were serious risks associated with the surgery, all risks we were willing to take to help our little boy.’
Ms Connell said the news that Kealii’s tumor had wrapped around his brain stem “broke Dennis and me both.”
‘The pain we felt was like no other. “The thought that our baby might not even make it to his second birthday was the hardest thing I have ever come to terms with,” she said.
‘I really can’t explain the pain and sadness we both felt that week. We both walked around the hospital like mindless zombies, still trying to put on a brave face for our children.
‘Seeing my incredibly happy son still running around as if nothing had happened and not knowing how much his life was about to change broke our hearts.’
Kealii’s (pictured) parents were warned that the best treatment to keep his childhood cancer-free is only available in America and he must start within 12 weeks of his operation
Kealii underwent surgery on January 23 and doctors were able to remove the entire tumor.
Describing how she saw her son for the first time after the operation, Mrs Connell said: ‘When we went in to see him he was attached to a bunch of cords, had the EBD coming out of his head and a breathing tube down his throat . .
‘It was so confronting for our baby to see.’
The right side of Kealii’s face was left paralyzed by the surgery.
“Kealii now has difficulty closing his right eye which requires him to apply eye drops every two hours, has difficulty swallowing and chokes on liquids and has a much lower voice pitch and speech is partially impaired,” Mr Jevdenijevic said.
Ms Connell added: ‘As sad as it makes me to see that he cannot smile fully, eat or drink properly, or even speak properly, I am also so grateful and blessed that the neurosurgeons here have the full were able to remove the tumor. ‘
A scan the next day confirmed Kealii was tumor-free, but the family’s victory over cancer was short-lived.
Tests on the tumor revealed it was a grade II ependymoma, which Mr Jevdenijevic said is “known to recur”.
The family was given two treatment options: stereotactic treatment and proton therapy treatment, and it was decided that PTT was the best course of treatment as it was likely to have fewer long-term effects.
However, it is only available in America and Kealii must start treatment within 12 weeks of his last surgery.
“The cost for this treatment is over $160,000 USD – this does not include flights or accommodation for the three months Kealii needs to be in Florida for treatment,” Mr Jevdenijevic said.
Kealii (pictured with his father) has just three weeks left to start his treatment in America, but his family are still trying to raise the money
It’s been nine weeks since Kealii’s surgery.
Queensland Children’s Hospital has applied for Commonwealth assistance, but it could take up to 10 weeks to hear if they have been approved.
“Normally we are not a family that asks for support from friends and the community like this, but our little boy needs our help,” Mr Jevdenijevic said.
‘Zoe was dismissed from her employment a week before we found out Kealii had a brain tumor, so we are currently on one income and want to keep our family together to do this.
“We are seeking all possible assistance to get Kealii and our family to Florida to begin his treatment in hopes of curing his cancer and allowing him to continue living a good life.”