Children's Cancer Institute

Brain cancer is the last thing you expect your child to have.

- Eve, Charlie's Mum

Pre-diagnosis

Before Charlie was diagnosed with cancer, he was enjoying daycare a few days a week and getting to know his baby brother, Teddy, who had been born just a few months before.

‘We’d gotten into a bit of a sweet spot,’ says Eve, Charlie’s mum. ‘We were just finding some normality after that difficult newborn stage.’

Eve describes Charlie at this time as gentle natured but cheeky, curious, inquisitive and an old soul.

‘He is and always has been just such a sweet, sweet boy.’

Symptoms

Trained as a nurse, Eve began to pick up on things that concerned her. First, she noticed Charlie had become quite clumsy. Then he began having a small vomit some mornings.

‘I thought to myself, I’m not going to read anything into this,’ recalls Eve. ‘Brain cancer is the last thing you expect your child to have, so it wasn’t something I was thinking of.’

One Monday, Charlie went to daycare and Eve asked the staff to call her if they were concerned about anything. A couple of hours later, she got a call to say that he hadn’t eaten anything all day, which worried her. However, after a nap, he happily ate lots of afternoon tea and seemed absolutely fine.

In hindsight, I should have just taken him in.

- Eve, Charlie's Mum

That night was Halloween, so Eve took Charlie trick or treating. The next morning, he woke up and had a vomit. When he sat on the couch saying ‘ouchy’ and grabbing his forehead, Eve says a lightbulb went off in her head.

‘I thought, this is related to pressure around his brain, and I immediately burst into tears,’ she shares.

That same day, she took Charlie to a GP who did a couple of neurological checks and told her he seemed fine. He was worse the following day, so she took him to a different doctor but was told the same thing. On Thursday when he was no better, she went back to the second doctor who gave her a referral to a paediatrician.

On Sunday morning when Charlie again woke and vomited, his parents decided it was time to go to hospital.

Diagnosis

At the hospital, Charlie was taken for a CT scan. Within 30 minutes, the senior doctor in Emergency delivered shattering news.

‘He came in and I just knew. It was the look on his face,’ says Eve. ‘He said “I’m really sorry, we’ve found a tumour.” He didn’t say much more because Liam and I were both crying. It’s just the most unbelievable feeling. You feel like your world is imploding all of a sudden.’

Devastating as the news was, however, Eve comforted herself with the thought that not all brain tumours are cancerous. ‘I knew that there was a really small chance it might be benign, and I clung onto that.’

Treatment begins

Charlie had his first dose of steroids in Emergency and was then admitted as an inpatient, moving to the ward upstairs.

The very next morning, any hopes that the tumour was benign were dashed when the neurosurgeon — whom Eve describes as ‘an angel on earth’ — came to visit Charlie and told Eve and Liam: “I’m sorry, but this is cancer.”

‘That was the beginning of an absolute whirlwind,’ Eve says.

Just a few days later, Charlie went in for surgery. Fortunately, 93% of the tumour was able to be removed, with the remainder left to avoid permanent damage to surrounding areas.

We weren't going to know anything until he woke up. It was a really scary time.

- Eve, Charlie's Mum

A nail-biting time followed, as Eve and Liam waited to find out what sort of problems Charlie was going to experience post-surgery.

‘We weren't going to know if his face was partially paralysed, if he could talk anymore, if he could blink. We weren't going to know anything until he woke up. It was a really scary time,’ she shares.

She says she cannot describe how good it felt when a few days later, Charlie said “Mummy” and gave her a little high five. ‘It was so special.’

Chemotherapy

It was a wait of several weeks before they could be given a definitive diagnosis: Group 4 medulloblastoma. Eve says that although Charlie’s prognosis wasn’t as bad as it could have been, they had very limited treatment options.

Eve and Liam were presented with two choices of chemotherapy: a large number of low-dose cycles, or less cycles of a higher dose.

‘We chose to do high dose cycles followed by stem cell rescue,’ Eve explains. ‘Knowing there was still a significant amount of tumour left in his brain, we were like “let’s get this started because we don’t want it to grow.” We were desperate to get on with it.’

We were desperate to get on with it.

- Eve, Charlie's Mum

Fortunately, Charlie responded well to treatment, suffering mainly minor side effects.

‘He handled it like a champ’, Eve says. ‘He’d be cheeky about something and we’d be like “Aw, we still have our Charlie!” And it helped so much, because it was really rough.’

Having Charlie away for Christmas was also hard for the family. ‘We made the best of the situation given that it was Teddys first Christmas, but most of the joy had been taken from us,’ she shares.

Once chemotherapy was over, Charlie was able to go home for a few days. By that time, the family had sold their house and rented a property close to the hospital, having travelled 50 minutes there and back multiple times a day for the past six weeks. And while it was tough to go from owing to renting, Eve says they were just grateful to find something suitable.

Radio Therapy

After nine months of chemotherapy the plan was to wait; but instead, Eve and Liam were given another choice to make: whether to do radiotherapy or not.

With Charlie just 3 ½ years old, they were very reluctant to subject him to radiation, knowing that it could cause permanent brain damage. The alternative was to wait and see if he relapsed, knowing that there was a very high chance of that happening.

‘It was a very hard choice,’ shares Eve. ‘The idea of radiation terrified me to my core. But the idea of his tumour coming back scared me equally, if not more.’

Charlie had six weeks of brain and spine radiation, requiring a general anaesthetic every day.

‘To know what the radiation was doing to him was the most awful part,’ Eve says. ‘But once again, Charlie just blew us away. The six weeks went by really quickly and we got to ring the end-of-treatment bell, which was wonderful.’

Today

Today, Charlie is doing well, though he has lasting side-effects of his treatment. These include hearing loss, speech difficulties and low concentration. He also has difficulty coordinating his movements and needs help getting dressed.

‘He basically had to learn how to walk again, go up and down stairs, squat down …. normal things that others take for granted,’ says Eve. ‘I don’t think about it too much, though, because I’m just so happy for where he’s gotten, and the fact that he’s now going to Kindy.’

Hopefully he will have a long, happy, healthy life.

- Eve, Charlie's Mum

Charlie requires regular monitoring with MRI scans. Eve says if something shows up on the scan, it could be tumour reoccurrence or it could be scar tissue – they won’t know until the next scan — which means they live in constant fear.

‘It’s really scary, but you just have to keep trying to live your life and make the most of the time you have with your loved ones.’

‘Hopefully he will have a long, happy, healthy life, and that’s all we could want for him. In the meantime, we’ll know that we did everything we could.’