Real Stories

Henry and Bec: Coping with childhood brain cancer

“I think one of the hardest parts of the diagnosis was hearing about the short and long-term effects of the chemotherapy and radiation. Radiation specialists told us that the radiation would hopefully stop the spread of cancer, but would also do damage in the long term to his brain.”

Bec’s little boy Henry was diagnosed with a brain tumour after he suffered severe migraines. Doctors told Bec that he had an 85 percent survival rate.

I was quite angry with the GP. When I’d told him the headaches were severe, he’d given me a lecture on the difference between headaches and migraines and made me feel like I was being neurotic.

Henry was operated on the day after his tumour was found. It was an eight hour operation with a range of risks involved in removing the tumour. The surgeon had to leave some of the tumour behind to avoid damage.

It took a few days to get the diagnosis – it was medulloblastoma. It’s a type of childhood brain cancer. They told us he had an 85% survival rate and they were actually quite positive about the fact that there was that chance of survival.

I think one of the hardest parts of the diagnosis was hearing about the short and long-term effects of the chemotherapy and radiation. Radiation specialists told us that the radiation would hopefully stop the spread of cancer, but would also do damage in the long term to his brain.

Oncologists were warning us the type of chemotherapy he was going to have could, among other things, do serious damage to his hearing and kidneys.

Once he’d recovered from the surgery, Henry then had six weeks of radiation, which we couldn’t have done in Bendigo.

Four months of chemotherapy followed, during which time Henry and I moved between the hospital in Melbourne and Ronald McDonald House.

He’d become neutropenic (at risk of infection) and we’d have to go to the hospital as soon as he showed signs of an infection, which I found really hard to judge.

Because I’d misread the signs of his brain tumour I was probably on edge a bit, thinking ‘I don’t want to miss something this time’.

Medications changed on a daily basis and there were a lot of appointments and procedures for him. It was the kind of chemotherapy that had him bedridden a lot of the time. In the middle of treatment we were told he may lose his hearing.

Henry was really upset at the prospect of that. I think that was one of the hardest times for him. Thankfully, when we got to the end of the four cycles of chemotherapy he only lost the high and low frequencies of his hearing.

We also had a week where we waited for test results to see if he had kidney damage. I found that the hardest part. There was just so much waiting – for good and bad news – and I’ve never been the most patient person! Luckily there was no damage to the kidneys.

Along with supporting Henry, Bec was also caring for his younger brother Tom, who was one year old. Bec’s mother stayed with them in Melbourne as much as possible, and her husband visited at weekends, working hard to keep his business running in Bendigo during the week.

The other issue we faced with the logistics of it all was that I was due back at work part time, after maternity leave with Tom, the week Henry was diagnosed.

In the end, because I was away for a year for Henry’s treatment, when I came back I rang them and they said ‘We’ve replaced you, sorry. If anything comes up we’ll let you know.’ I guess you could say I lost a permanent part-time job.

The nature of Henry’s illness meant that even when we got back to Bendigo, there were a lot of trips to Melbourne.

I was down in Melbourne easily once a fortnight for various check-ups and trying to keep up with medications, and he needed a lot of rehab with physio down there.

He had to have plasters to sort out his neuropathy (where nerve endings in his foot had died as a result of chemotherapy). After seeing the physiotherapist at the Royal Children’s he was walking again in about six weeks.

However, even three years later he still wears orthotics, which we get checked every six months.

I still felt well supported throughout Henry’s treatment by both her family and hospital staff, as treatment came to an end there were different challenges to face.

You move home and all of the specialists, nurses, oncologists and everyone at the Royal Children’s are suddenly a two-hour drive away!

Because he’s in remission, I think people generally assume: ‘Oh, he’s fine now’.

People don’t realise the long term effects of cancer – you wouldn’t unless you were an oncologist or someone with first-hand experience of the kind of treatment he’s had.

They assume you will just slip back into life as it was and return to work.

There were just so many follow up appointments! He was still having an MRI every three to four months, plus dentist, endocrine and physiotherapy appointments and so on and there’s still that worry it’s going to come back.

I think what Redkite does is the best kind of help that a family needs.

~ Bec

As a family our main need was just that bit of financial help, right when a bill comes in, because you’ve got one parent pretty much out of action, and one is trying to earn a living.”

One of the best things about Redkite was when they kept my husband and others in Bendigo informed while I was in Melbourne, as well as getting the moral and financial support that I needed.

Our phone bills were massive. Redkite actually paid for one of those bills, which was a huge help financially because other things were mounting up. You don’t want to have to be worried about suddenly getting an unexpected, very large bill.”

Redkite also gave us some petrol vouchers which made a huge difference with all the travel between Bendigo and Melbourne.

The main thing is Henry’s now up and walking again and he’s at school.

He gets very tired, and we’re still doing trips to Melbourne for check-ups, but they’re not as often.

There’s also been some other things that have cropped up just in the last few months, and we’re not sure if they’re related to the treatment he’s had, but we’re having to monitor him with MRIs every six months to keep an eye on him.

It is horrific to watch your child go through such a huge number of intense and ongoing treatments and procedures, but it does highlight constantly to me the importance of trying not to get distracted in life by the things that don’t matter.

For us, Redkite was there right when we needed some support. It was like a hand out of a trench – an ongoing battle of back and forth.

~ Bec

We received great support from a community of people we’d never met – support which stands out in our memory of that time.

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