My beautiful son, Jett, aged 13 was diagnosed with Brain cancer in October 2022.
He had 12 months of symptoms and was referred to have a spinal MRI but never one on his brain.
In late September, I sent him on holidays with my mum to see my brother in Mackay, QLD. I remained home on the Central Coast to run my company as a child’s behavioural practitioner.
Jett landed in Mackay and went blind. The hospital checked his eyes and sent him home saying he was ok. My mum who is a registered nurse refused and demanded an MRI. Hours later, I was called and told that my son has a large mass in his head and is being transferred to Townsville by helicopter!
I flew up not knowing where he was or what was happening. I arrived that night and Jett had his first surgery to deflate the cyst. He was still blind and had more surgery days later that lasted for nine hours to remove what they thought was a grade 4 Glioma. They believe he had this tumour for 12 months.
We spent five weeks in Townsville and then took multiple flights to get back to the John Hunter Hospital in Newcastle.
Jett had 33 rounds of radiation, two major surgeries, was deemed legally blind and is now undergoing 12 months of chemotherapy.
After each round of radiation, he swam 1km and walked 5km! He has defied the odds in every way! His surgeon had no idea how he was at school doing year 7 days before he almost died and went blind.
He has a very rare, neuroepithelial tumour that hasn’t even been recognised by WHO. It took 10 weeks to discover he didn’t have a Glioma. There is no data nor can you google this type of tumour.
Jett is gentle, kind and so humble. He believes having brain cancer and going blind is his story for a reason.
We are still in contact regularly with Townsville hospital. They believe he is a medical miracle and is alive to advocate for brain cancer.
As a single mum, this has been the biggest battle, giving up work for 4 months, navigating a whole new world, and knowing Jett has faced more trauma than any child should ever know.
I have never been prouder of my son and I know one day he will be pivotal in this field!
Written by Jett’s mum, Sam.