Children's Cancer Institute

We lost a brave and funny, irreverent and cheeky, observant and empathic boy - his life was way too short."

- Kate, Finley’s mum

On 15 September 2017 Kate, Paul, Jacob, and Liam lost their darling 9-year old son and brother Finley to a deadly DIPG brain tumour.

Pre-diagnosis

It was exactly 6 months to the day from Finley's diagnosis to his death. Finley was just 9 years old. Nothing in the world nor the infinite universe could have prepared his family for those 6 months. It is something that no one should ever have to experience - not the child, parents, siblings, extended family, best friends, classmates, village, or community.

Symptoms

Driving back from sport one Staurday, Finley complained that he was seeing double when looking at the roadside billboards. Being concerned, Finley's parents booked him in to see an Optometrist as soon as possible. The following Tuesday, Finley's optometrist said his eyes looked fine, but he referred Finley to an Opthalmologist for further investigation.

Diagnosis

When Finley felt to unwell to go to school the following day, Kate, a Clinical Psychologist, had a strong inkling that something just wasn't right. Kate decided to take Finley to Randwick Children's Hosptial, where within a few hours, he had been taken for an MRI scan.

By 6pm that night, Kate and Paul received the devastating news that Finley's scan results showed a brain stem tumour. At just 8 years old, Finley was diagnosed with an inoperable and incurable brain tumour called diffuse intrinsic pontine glioma, or DIPG.

In the months leading up to Finley's diagnosis he had vomited a few times, but there was nothing to suggest that Finley was seriously ill with a deadly brain tumour that most people have't even heard of. Children with DIPG can often appear completely well, with quite a short interval of time and minimal symptoms before becoming seriously unwell.

DIPG is incurable because the location of the tumour makes surgery impossible. Currently there is no effective treatment, and whilst radiation therapy is offered, chemotherapy and other drugs are not effective and most children will die within a year of diagnosis.

Treatment

Finley's cancer progressed rapidly. Just one week after diagnosis he was not able to walk very much and commenced 8 weeks fo radiation therapy. This treatment temporarily shrank the tumour, enabling Finley to bounce back and resume walking and doing most other things for a precious 2-month window during Man and June. During this time Finley still experience double vision, a limp and fatigue from the radiation.

Sadly, Finley didn’t really resume school again after his diagnosis, and because his cognitive function was not impaired, Finley was fully aware that he was very unwell. One of the hardest things for Paul and Kate was talking to Finley about his prognosis. By the end of July Finley had lost his speech, couldn’t swallow, and struggled with other bodily functions.

As his condition worsened, it became apparent to Finley that he was going to die. This brought up strong emotions for Finley, and his family were there to help him through his anger and complex range of thoughts feelings - whilst also experiencing their own.

Finley’s brothers Jacob and Liam also found this period incredibly difficult and struggled to understand why this had to happen to their little brother. Knowing that time was limited, the family went into a cocoon together and focused all their love and care on Finley whilst trying to keep him comfortable.

Finley was able to have his friends visit, sit with him, and hold his hand, despite not being able to speak with them. In his final weeks, Finley’s family learned to communicate by numerical tapping of fingers.

Finley’s last days were spent in bed with his beloved dogs - listening to stories that were read and played to him by his brothers and his devoted parents.

The Death of a Child

It's like losing your breath and never catching it again.

It's a forever panic attack as your soul is screaming for them.

It's like feeling your heart dying as you continue to lose your mind.

- Author unknown

In honour of Finley

“In honour of Finley and to prevent other children suffering, we started our Fair Warriors community and continue to be ambassadors and raise funds for all the amazing research work that the Children’s Cancer Institute is doing to find cures and treatments for children’s cancer - in particular brain tumours.”