Karyn from Canberra, had a son who died from a brain tumour some years ago. She is glad she got to be there for him.
‘It was the hardest thing I’ve done, but I’m glad I could be his carer.’
How did you start to be a carer?
My son Jack was diagnosed with terminal brain cancer, after just 3 days of symptoms.
We knew from the outset that it was terminal so I left work immediately and became his carer. He had 3 weeks of radiotherapy in hospital, then 3 weeks in Ronald MacDonald House in Randwick before he came home.
It was 7 months from the time he was diagnosed until he passed. Jack was amazing. He didn’t complain, he just took things in his stride even when other kids in the hospital would complain about this or that.
His bravery got us all through.
‘Today, it’s still as raw as when it all happened.’
What is happening now?
Today, it’s still as raw as when it all happened.
We do have a new baby who has brought some sunshine to our lives, and we also have an 8 year old. He was Jack’s little brother and he was always my difficult child –! But he has turned out to be such an awesome kid. He has been through way more than anyone of that age should have to. And we didn’t sugarcoat things for him – we kept things age appropriate, but he still saw us upset and saw everything that happened.
He has come through it all. And it’s lovely to see Jack’s friends now acting as big brothers to him.
What is the hardest thing about being a carer?
The hardest thing was seeing my little boy deteriorate and know there was nothing I could do.
‘People said I was strong, but I think I just did what anyone would in the same situation. I had to cope, so I found I could.’
What is the best thing about being a carer?
I learnt a lot about myself. I found resilience in myself to do things I never expected I could do, or that I would need to do. People said I was strong, but I think I just did what anyone would in the same situation. I had to cope, so I found I could.
What have you found that helps you?
I got a lot of support. My parents and my husband’s parents came from Queensland and spent time with us. Sydney Children’s Hospital social workers and palliative staff helped us so that Jack could come home instead of staying in hospital. I really appreciated that.
What would you like to tell other carers?
I was so glad to be there for my child. It was the hardest thing I’ve done, but I’m glad I could be his carer. Does that make sense?