Children's Cancer Foundation
Hayden has been fighting hard following a brain tumour diagnosis in 2015. Mum Simone shares his long, painful and sometimes frustrating road to recovery.
Prior to their son Hayden’s diagnosis in October 2015 at aged five, Simone and Richard Clements didn’t know much about childhood cancer.
‘’When receiving Hayden’s diagnosis of pilocytic astrocytoma we were told brain tumours are the number one cause of death in children. We soon discovered that childhood brain cancer research was relatively under-funded and that survival rates hadn’t changed in thirty years’’. Simone revealed. ‘’The hefty financial and psychological impact came as a surprise later too’’.
‘’We are still mad that this happened to our family, but we’ve tried to let go of the anger and focus on having hope instead’’.
A few days after Hayden’s fifth birthday, he woke and told his mum and dad that he couldn’t use his left arm, lift it or squeeze his fingers. The early signs were there, ‘’When I looked back on photos and videos leading up to his diagnosis, I realised he had become unusually clumsy’’, Simone recalled.
A CT scan revealed a 4.2cm tumour in Hayden’s brain stem. To determine the type of tumour, he was admitted to hospital straight away for a biopsy. While his childhood brain cancer was deemed inoperable and incurable, the Clements learned there were treatment options.
Hayden endured countless MRI’s, tests, operations and two types of chemotherapies fortnightly for a year. Some weeks he received the two chemotherapies in one day, as well as having to take steroids to shrink the tumour. The family travelled back and forth from the hospital due to the frequent complications Hayden experienced.
‘’The steroids made his face and belly swell so much that he no longer looked like our boy’’, Simone said.
Hayden has been left permanently disabled from his brain tumour and course of treatment. His impairments include residual left side weakness, muscle deterioration, fatigue and concentration issues, as well as hearing and eyesight impairments and dental issues.
“Hayden also has complex emotional and psychological issues and learning difficulties. He sometimes struggles with simple daily tasks and gets frustrated by his limitations’’, said Simone.
Hayden missed a lot of school because of treatment and is only now back full time in year four, with some respite days required.
This was the beginning of a long road for Hayden, but as the treatments worked in shrinking the tumour, he slowly regained his abilities. Persevering through four years of rehabilitation, ‘’He has worked exceptionally hard to regain his skills. It hasn’t been easy’’. Simone told us.
‘’Nutrition, rest, and sleep have been critical, along with light exercise, fresh air and a bit of sunshine, while also being mindful of excessive sun exposure during chemotherapy’’, Simone said. Hayden also enjoys meditation and mindful colouring as other ways to manage stress and anxiety.
Hayden has adapted to life using a wheelchair, wearing an Ankle Foot Orthosis (AFO) on his left leg and orthotics. He can’t do many things children his age can, which sometimes causes Hayden frustration and anxiety. (AFO) on his left leg and orthotics. He can’t do many things children his age can, which sometimes causes Hayden frustration and anxiety.
Simone explained that Hayden has learned to accept his limitations and understands that his body has been through a lot. ‘’I often find him lying on the ground resting while his siblings play, still trying to be part of the game’’.
Hayden’s tumour has been stable for three years with no significant growth. However, he does have a fluid-filled cyst growing from his tumour which requires monitoring.
There are no guarantees. Hayden’s brain tumour could regrow at any time. The Clements remain hopeful that the trial Hayden participated in was successful to give him a long and happy life. Regular MRI’s, appointments, check-ups and rehabilitation are still part of life.
‘’Hayden has such a positive attitude. He uses his experience to advocate for childhood brain cancer awareness’’, Simone said, including sharing his life on Instagram.
Thank you to the Clements Family for sharing their story with us.
Photo credits: Simone Clements, Mother of Hayden