Kye's story

As Kye plays with his toys, doctors and researchers are desperately trying to find a cure for the form of brain tumour this gorgeous boy was diagnosed with last year.

Mum Cinnamon explained that Kye’s doctors informed them late last year that Kye had a diffuse intrinsic pontine glioma (DIPG) brain tumour.

“This tumour is in the pons region of the brain stem, intertwined between nerves and arteries that control the body,” she explained.

“DIPG is aggressive, inoperable and incurable. It takes away the ability to walk, talk, breathe, swallow and survive.”

“Chemotherapy doesn’t work in DIPG patients and, sadly, it has a zero per cent survival rate.”

It was a Friday night – 22 September 2017 – when Cinnamon and Scott, Kye’s dad, noticed something was wrong with their little boy. “On Monday we had a GP appointment and I discussed my concerns. The GP referred Kye to a specialist paediatric doctor, which would be three weeks later,” Cinnamon recalled.

“When we got home from the GP appointment, I noticed Kye was very clumsy when walking, even falling over three times in one hour. I took him straight to the emergency department at our local hospital for more answers.”

At the Rockhampton Base Hospital, an MRI scan was performed on Kye. “Shortly after we were told they had found a brain tumour in the pons area of the brain stem,” Cinnamon remembered.

“Kye was placed on steroids to reduce the swelling on his brain from the tumour.”

Kye and his mum were flown to Brisbane and arrived at Queensland Children’s Hospital at 1am on Wednesday 27 September 2017.  We were admitted in emergency and then given a room on 11a. Kye would stay here for the next six weeks.

“Our whole lives have been turned upside down from that day when he was diagnosed at Rockhampton Base Hospital, however, we did not realise at the time how bad things were. “

"We thought the surgeons may be able to operate or maybe chemotherapy might help him, but, sadly we were wrong.”

The family relocated from Rockhampton to Brisbane to be together – more than 600km from their home. Cody, Kye’s older brother, attended the Queensland Children’s Hospital School and both parents used annual and sick leave from work to be together and with Kye.

“Kye spent six weeks as an inpatient in 11a, then another four weeks in Brisbane close to the hospital. Ten weeks total away from home, away from our family and pets and Cody away from school.”

During the long stay in hospital and in Brisbane, Kye enjoyed the distraction of some of the services offered by the Children’s Hospital Foundation.

“While Kye was an inpatient, we loved the pet therapy, music therapy and the bedside play volunteers. It was a fantastic distraction for him from the usual doctors and nurses.”

A few weeks after finishing radiation and after the family returned home, they received a call for Kye to be part of a DIPG trial. “Kye needed to have an MRI and his first infusion within one month of finishing radiation,” Cinnamon said. “We immediately went back to Brisbane to start the trial.”

Because of the trial, Kye gets a Nivolumab infusion every two weeks at Queensland Children’s Hospital.

“This trial has given us some hope, where at first, we had nothing.  Kye has had 16 infusions so far and the oncology team are very happy with how Kye is going. The oncology research team are also watching Kye closely and how he is doing on the trial.”

Kye started Prep this year and has been on a few holidays with his family.

Cinnamon has worked at Woolworths for more than 20 years since finishing school. She said her store – at Northside Plaza, Rockhampton – had been extremely supportive since Kye’s diagnosis almost a year ago.

“The staff have done an enormous amount of fundraising for our family and we are very grateful for the financial and emotional support,” she said.

Kye is one of 19 ambassadors for the Woolworths Regional Wall Tokens campaign.

By purchasing a $2 wall token from now until the end of September, you are helping fund equipment and programs in your local hospital, which help families like Kye’s through an emotional, stressful, and at times uncertain journey.

Woolworths Regional Wall Tokens is an opportunity to highlight some of the brave kids throughout Queensland and northern New South Wales, who you can help by purchasing a wall token.

Other ways you can help

Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.