Children's Cancer Institute

I was like any other parent when they find out — I was a mess.

- Ebony, Theodore’s Mum

Theodore was two years old and full of energy when he was found to have cancer. That’s when, in his mother’s words, ‘everything came crashing down.’

Pre-diagnosis

A fun-loving toddler, Theodore loved spending time with his family, including big sister, Addison, and several close cousins whom he adored. He especially loved being outside, and was often found playing basketball or football with his father, Kyle.

Theodore’s mum, Ebony, describes him as wild. ‘He was jumping off coffee tables and doing back flips on the couch. He’d ride his balance bike down huge hills like a crazy kid. That’s why, when bruises appeared all over his body, I didn’t question at first …because he was so wild.’

Symptoms

Ebony says Theodore was sick on and off all about a month, during which there were several trips to the GP. ‘I was told it’s just viral, wait it out… that kind of thing,’ she says.

‘He had had an ear infection, a cough and ongoing breathing issues, and he was just so low on energy.’

‘One morning we went to see his cousins. They were running around playing at the playground, and Theodore sat on my lap falling asleep. That’s when I knew something wasn’t right.’

I think I need to take Theodore to get blood tests because I’m terrified he has leukaemia.

- Ebony, Theodore’s Mum

Ebony had just watched her best friend’s daughter, Ava, go through two years of cancer treatment, having been diagnosed with the blood cancer, acute lymphoblastic leukaemia (ALL).

‘I said to my mum, “I think I need to take Theodore to get some blood tests because I’m terrified he has leukaemia.” And she said, “you’re just terrified because of what you’ve seen Ava go through. But go and get some blood tests and rest your mind.”’

Diagnosis

Ebony took Theodore for blood tests at the local hospital, where she worked as a paediatric nurse. Then she received the news she had been fearing most. Her little boy had ALL — the same type of cancer Ava had been treated for.

‘They said, “It is what you think it is. You’re getting transferred to Monash right now.”

Having seen her best friend in the exact same situation, Ebony knew what was coming and what needed to be done. However, she says she doesn’t know if this was a blessing or a curse. ‘I think I was like any other parent when they find out. I was a mess.’

I was thinking, how am I going to get through this

Ebony, Theodore's Mum

At this point, Ebony was 29 weeks pregnant with her daughter, Finley. She began to worry that she was going to be in hospital with Theodore for the rest of her pregnancy.

‘I was thinking, I don’t want to be this emotional and have the baby there. How am I going to get through this?’

As it turns out, the new baby was a blessing. ‘She’s made everything better,’ Ebony says. ‘She and Theo are tight knit, and she was meant to be here.’

Treatment

Theodore went on chemotherapy, and Ebony began to juggle a newborn baby with a child in treatment with cancer.

‘I’d sleep in Theo’s bed with him. When Finley woke up, Kyle would come and tap me and I’d get up to breastfeed her, then go back to Theo,’ she says. ‘I was a zombie.’

Fortunately Theodore responded well to chemotherapy. He had no major reactions and was able to receive much of his treatment as an outpatient. However, it was far from easy.

Ebony found it particularly hard when one of her other children got sick, like the time Addison got gastro the day she came to the hospital to visit her newly born baby sister. Ebony and Kyle felt they had no choice but to take her to stay with her grandparents.

‘That was emotionally so hard for me, that I wasn’t able to be there for her when she was unwell,’ Ebony shares. ‘I’m her mum and that’s all I wanted to do.’

Side effects

Ebony describes the first phase of chemotherapy, known as induction therapy, as the absolute pits. ‘Theo became an empty shell of himself. There were no smiles, no laughs, no anger, no anything. His face was absolutely blank. We felt like we’d lost him, really.’

Along with the chemotherapy, Theodore also received high-dose steroid treatment, renowned for causing insatiable hunger and aggression. Ebony was not surprised when her son’s behaviour changed.

‘He ate constantly and lost his ability to walk. He just stayed in bed, staring at the iPad and eating food,’ she says. ‘He didn’t really communicate at all.’

He became an empty shell of himself. We felt like we had lost him.

Ebony, Theodore's Mum

At the time of writing, Theodore is still on chemotherapy (maintenance therapy) as well as steroid therapy, and is expected to finish treatment in July 2024 — about 26 months after being diagnosed.

Aside from eating ‘non-stop’ and being very lethargic, Ebony says he can be very emotional. ‘We tell his sisters that he’s on the nasty medicine. He doesn’t want any of his things touched. He doesn’t want anybody near him.’

Today

Theodore has recently started attending Kindergarten two and a half days a week and, while he enjoys it, Ebony says he is exhausted by the end of the day. Nonetheless, she thinks he is starting to get more energy back and is beginning to make new friends.

‘I feel like between COVID and his cancer diagnosis, he hasn’t really had any social life whatsoever,’ she says. ‘So probably the greatest joy for Kyle and me is when we see him playing with someone or communicating with another little child his age.’

Reflecting on her own experience, Ebony says she likes to think that it has changed her for the better.

‘One thing is that when I tell my kids “I love you”, I feel like I know the meaning of that now, more deeply. I look at them now and think, what would I do if I lost one of you?’

She has also become a passionate advocate for childhood cancer research. ‘There are so many charities we could make money for, but research is what’s going to make a huge impact.’

‘To those who donate, I want to say thank you, your money is going to the right place.’