Spotlight on Medulloblastoma: Freddie
Sunday 26 September is Childhood Brain Cancer Awareness Day, this year the focus is on medulloblastoma brain cancer.
How old was Freddie when he was diagnosed?
Freddie was seven years old. He is now nine. We thought he had gastro and was cleared from the local GP, then sent home a few days later from emergency. But finally we demanded a scan – it revealed a tumour and the next day Freddie went in for an eight hour brain surgery to remove the tumour.
Can you tell us a little about Freddie’s brain cancer journey?
Following surgery Freddie had six weeks of radiation to the full brain and spine, everyday. We couldn’t stay in the room with him, we had to watch him on a screen. Luckily he was mature enough to not need a GA for this procedure like some other kids. I also feel that music therapy really calmed him at this time. We had to wheel him quite a way from the oncology ward to the radiotherapy area and often ‘Music Mike’ would walk alongside us playing Freddie’s favourite tunes on his guitar. He then would often stay in the room until the last minute playing. I remember the walls to the room were 2m thick to prevent us from any radiation. That was heartbreaking knowing what that machine was doing to his brain and spine. But also feeling grateful as we knew he needed it to survive.
We sold our house in Sydney, quit our jobs and moved the family across the country to Perth to give Freddie access to a clinical trial out of Perth Children’s Hospital under Dr Nick Gottardo. He is incredible and we feel very lucky to have had him as Fred’s oncologist.
How has Freddie’s treatment impacted him day to day?
He has permanently lost some hearing (he now wears hearing aides), he has lost some balance, some gross and fine motor skills. He hasn’t got all of his hair back. We think he has done so well, other children who go through the treatment don’t often come out so unscathed.
What are some of Freddie’s favourite hobbies?
He loves playing AFL, floorball, basketball, tennis, swimming and hockey. He also loves music, drawing and reading.
Fred wants to start learning an instrument next year and be in a rock band. He loved receiving the ukulele during his treatment from RCD.
How is Freddie doing now?
Here in Perth he started a new school bald with an NG tube, had seven months of gruelling chemotherapy. He made some very special friends in a caring and nurturing local school.
We are so grateful Fred gets to lead a relatively normal life. If generous people hadn’t funded brain cancer research 20 years ago he would not be leading the life he is today. We know we are not out of the woods but at the moment he is clear of cancer. Every three months they take spinal fluid and he has an MRI. So far so good and we have hope he will beat this dreadful disease.
Is there anything else you’d like to add?
He is such a kind, positive and brave kid. We are so proud of him.
You can support Freddie’s Connor’s Run FUNdraising efforts by donating to his page here