Real Stories
Trystan and Jodi: ‘I won’t let cancer take my son’
“Cancer is what took Trystan’s father away. I thought I was going to lose my son. I just thought: ‘He’s going to die.’ There were times when he came quite close to it.”
Cancer affects families in more ways than one. Cancer took Jody’s husband, but she is hellbent on making sure it won’t take her son.
“Cancer treatment is never ever over. It won’t ever be over for any of us. Relapse is a very real word, a very dirty word. And we live day to day thinking: is today the day?”
~ Jodi
My name is Jodi. I’m from Ulverstone in Tasmania and my son, Trystan, was diagnosed with acute lymphoblastic leukaemia (ALL) at 3 years old.
I took him to the doctor and straightaway he said: “We need blood tests now.” The doctor was telling me: “Don’t panic”, of course, that’s much easier said than done.
We got his blood tests done and a few hours later the doctor rang me and said: “You need to pack an overnight bag. Get ready and call an ambulance and get straight to the hospital. Trystan has leukaemia – acute lymphoblastic leukaemia.”
To hear those words said about your three-year-old son is absolutely heartbreaking – it still is.
“They were pumping poison into my three-year-old boy. To finally – finally! – hear that he reached remission was something that I’d never ever thought he was going to reach. I just thought he wasn’t going to make it.”
When we got down to Hobart for treatment, our two to six weeks treatment actually took 12 months. Trystan didn’t reach remission quite a few times. When the diagnosis was originally given, I just didn’t know what ALL was. I hadn’t heard anything like that, and I guess what came to mind was: cancer.
Cancer is what took Trystan’s father away. I thought I was going to lose my son. I just thought: ‘He’s going to die.’ There were times when he came quite close to it.
I can still recall that moment during Trystan’s treatment when it wasn’t working. It was as if I knew that the doctor what the doctor was going to say. I knew it was going to be bad news.
When they told me they would have to intensify Trystan’s treatment, it was heart-breaking. I could see it in my son’s eyes that it wasn’t working. He just looked so, so sick. As his mother, I could see that.
Trystan would have to go in for a bone aspirate. No remission. He would come back for a lumbar puncture. Still no remission. That’s when I actually thought: ‘It’s not working. He’s getting sicker and sicker. He’s just going to die.’
They were using more potent treatments. They were pumping poison into my three-year-old boy. To finally – finally! – hear that he reached remission was something that I’d never ever thought he was going to reach. I just thought he wasn’t going to make it.
That was one huge moment. It was just so, so exciting. That was the best news to hear.
We ended up staying in Hobart for 12 whole months, before we were able to go back home. At the time, I was separated from my other children. They stayed at home and I was supporting two separate households.
When I could, I paid for the children to be transported down to Hobart to stay with us. On those very lucky occasions when we were allowed to leave Hobart, we would come home for a few days.
Luckily, there are some fantastic support counsellors around the Royal Hobart Hospital. A fantastic lady helped me out and actually applied for some support through Redkite.
She was fantastic with helping apply for financial assistance for families. Hospitals are a very expensive place, particularly when you’re in there for a long time. This assistance essentially what kept us afloat during this period.
This extra support, in the way of fuel vouchers and food vouchers, was just amazing. I don’t think I could have survived. It was an absolute huge help.
I can’t thank Redkite enough for that kind of support. It’s huge to me. It’s what kept us living.
One of the best things we got from Redkite is when we got to hospital and we were presented with a Redkite Red Bag. That’s one of my never-forget-moments.
It was just at a very hard and lonely moment. It showed somebody cared. I didn’t know these people. But somebody cared.
What was in it was very, very useful. And we still carry that bag to hospital with us now.
Most mums do it – it becomes their hospital bag. If you see those bags, straight up you know, oh, that’s a cancer family. That was huge. It meant a huge lot to me being down there on my own with this bag that became almost like a security blanket.
Cancer treatment is never ever over. It won’t ever be over for any of us. That thought of: ‘I’ve got no more medication to give the child – what now? What’s going to stop it from coming back?’
There’s always that thought: relapse. Relapse is a very real word, a very dirty word. And we live day to day thinking: is today the day?
This experience teaches you an awful lot about yourself. Your strengths. What you can grab from them. It makes you a better person. Once upon a time, the things that used to worry me, upset me – they’re irrelevant now. In the big scheme of things, they’re nothing. As long as we’re happy, we’re healthy, we’re a family unit.
Cancer has made me a stronger person. I can deal with a lot more. It can still get me down, but I know that I have a lot more fight in me.
Cancer may have taken Darren, the children’s father, away. I’m not going to let it take my son.
There is hope. There is a tunnel. Just keep going through it.
Keep going through it.
Receiving a Red Bag was one of Jodi’s never forget moments during Trystan’s cancer journey. For her, it showed her somebody cared.
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