The parents of an Australian boy battling brain cancer have recalled the heartbreaking moment they discovered he had the disease, as they struggle to raise enough money for life-saving treatment.
Kealii, the youngest of Darwin couple Dennis Jevdenijevic and Zoe Connell’s three children, was diagnosed with brain cancer late last year.
Despite undergoing miraculous surgery in which the tumor was completely removed, there is still a very high risk of Kealii’s cancer returning.
His parents were told there is a treatment option that could give their son a cancer-free childhood, but they only have three weeks left to raise the money.
The couple recalled the first moment they hinted that something was wrong with little Kealii on December 17, 2023, when he was just 16 months old.
Darwin boy Kealii Jevdenijevic (pictured) underwent surgery on January 23 to remove a tumor surrounding his brain stem.
“Kealii was playing in an indoor playground and had this episode that led to him not being able to walk, stand or control an entire side of his body,” Connell wrote on social media.
“He went limp, very sweaty and couldn’t speak. We thought some hugs and sitting up would help, but that wasn’t the case.
Doctors thought Kealii might have had a seizure, so he was kept overnight at the Royal Darwin Hospital.
‘The next day Kealii had a sprain on the left side of his neck, when he walked he would start to lean to the left side and if he went up at a fast pace he would almost fall and would have to slow down. ‘ said Mrs Connell.
Kealii was referred for an emergency MRI on January 12. The test revealed that the boy had brain cancer.
‘Dennis and I sat in a small waiting room and (our pediatrician) came in with another pediatrician. “He asked us to go to another room that was a little more private,” Mrs Connell said.
‘As soon as he said that my heart sank, I knew something wasn’t right.
“I still remember the words clearly: ‘I told you during your appointment that if something was wrong someone would tell you right away, I’m so sorry, but we found something and Kealii has a brain tumor.’
‘I burst into tears, my heart broke. I felt like someone had shot me directly in the chest, I wanted to vomit, my whole body started shaking and going into shock.’
While the surgery was successful, there is a strong chance that Kealii’s cancer (center) will return due to her type of tumor.
The family was told they should immediately go to Queensland Children’s Hospital for “hope of surgical intervention”.
“Zoe and I were informed that the tumor had spread around Kealii’s brainstem and had begun to travel down to his spinal cord,” Jevdenijevic explained in a post to a gofundme page.
“Because the tumor was so close to his brainstem, the surgery carried serious risks, and we were all willing to take risks to help our little one.”
Ms Connell said the news that Kealii’s tumor had spread around her brain stem “broke Dennis and me”.
‘The pain we felt was like no other. “To think that our baby might not even make it to his second birthday was the hardest thing I’ve ever faced in my life,” he said.
‘I actually can’t explain the pain and anguish we both felt that week. We both walked around the hospital like mindless zombies while trying to put on a brave face for our children.
“Seeing my incredibly happy son who was still running around like nothing was wrong and not realizing how much his life was about to change broke our hearts.”
Kealii’s parents (pictured) were warned that the best treatment to keep her childhood cancer-free is only available in the United States and must begin within 12 weeks of surgery.
Kealii underwent surgery on January 23 and doctors were able to remove the entire tumor.
Mrs Connell described seeing her son for the first time after surgery, saying: “When we went to see him, he was hooked up to a bunch of wires, he had the EBD coming out of his head and a breathing tube down his throat. .
“It was a very difficult thing for our baby to see.”
The right side of Kealii’s face was paralyzed by the surgery.
“Kealii is now having difficulties because he cannot close his right eye and requires eye drops every two hours, difficulty swallowing, choking on liquids, and has a much lower tone of voice and partially affected speech,” Mr Jevdenijevic said. .
Ms Connell added: “As sad as it is to see him not being able to smile, eat or drink properly, or even speak properly, I am also very grateful and blessed that the neurosurgeons here were able to remove the entire tumour.” ‘
A scan the next day confirmed Kealii was tumor-free, but the family’s victory against cancer was short-lived.
Tests on the tumor revealed that it was a grade II ependymoma, which Jevdenijevic said is “famous for coming back.”
The family was offered two treatment options, stereotactic treatment and proton therapy treatment, and it was decided that PTT was the best course as it would likely have fewer long-term effects.
However, it is only available in the United States and Kealii must begin treatment within 12 weeks of his last operation.
“The costs of this treatment exceed US$160,000; this does not include flights or accommodation for the three months that Kealii must remain in Florida for treatment,” Mr Jevdenijevic said.
Kealii (pictured with his father) has just three weeks to start his treatment in the United States, but his family is 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 be up to ten weeks before they know if they have been approved.
“We’re not normally a family that asks for support from friends and the community, but our little one needs our help,” Jevdenijevic said.
‘Zoe was fired from her job a week before we found out Kealii had a brain tumour, so we are currently reliant on one income and want to keep our family together for this.
“We are seeking all the help we can to get Kealii and our family to Florida to begin her treatment in hopes of curing her cancer and allowing her to continue living a quality life.”