The second stage of my recovery crept up quickly, as I qualified for a clinical trial for my newly diagnosed medulloblastoma.
I first heard of the trial from Minderoo Foundation, which got in contact with my mum through a friend from high school.
This was one of a few brain cancer trials led by Dr Amar Gajjar at St Judes Hospital in Memphis, USA. As I was unfit to fly, it was fortunate that Dr Nick Gottardo, who was trained by Dr Gajjar and was another one of the world’s leading specialists for medulloblastoma, could run my clinical trial here at Perth Children’s Hospital (PCH).
Due to the timeframe of the trial, we had to race to have my tumour sequenced. After a week of various intensive tests (which would be used as a baseline to compare the effects of the trial treatment), we made it by the deadline and were ready to commence radiotherapy.
Radiotherapy doesn’t start with treatment – first you have to create body and facial moulds. These would keep me still, which is vital for accuracy during each individual radiotherapy treatment.
I was laid on a “bean bag” type bed, as the radiotherapist moved and shifted the bag until it moulded perfectly to my back. They then placed a hot rubbery, mesh mask over my face and stretched it back, moulding it to snugly fit my face.
Freezing cold icepacks where then placed strategically all over my face to set the rubbery material, which hardened as it got colder.
It became a perfectly moulded green mask that would be used in conjunction with the body mould to keep me still throughout my treatments.
On the 24th of October, just 32 days after my operation, I began my first radiation treatment. It was to be done at Sir Charles Gardner’s Hospital (SCGH) and heading the radiation team was Leigh who made the daily grind a lot of fun and who I developed a great relationship with.
The first treatment was quite long because they have to be so exact in their measurements to pin-point the position of the tumours, (it also probably didn’t help that I had put on 14kgs in the few weeks from when they made my moulds!) Subsequent treatments only took about 15-20 minutes.
We quickly got into a groove. Five days a week mum would wheel me from Ronald MacDonald House to Sir Charles Gardner Hospital and PCH appointments for the clinical trial. It started to feel like I was back at school, instead of at the hospital!
During radiation I was visited by two Perth Glory Players. Being a Glory fan myself this was an amazing experience that helped me create connections and friendships that would continue to play a huge part in my recovery and wellbeing for the whole treatment.
During this time I also met Minderoo Foundation chairman Andrew Forrest and spoke to him about potentially fundraising for the Walk 4 Brain Cancer event that was to be held on the 11th of November. Andrew suggested we could walk together, and I could speak at the event. I began to work on my speech and I opened up a fundraising page on the Walk 4 Brain Cancer website.