Home is where the heart is

When a child is diagnosed with cancer, their entire family suffers. Here we meet a Hobart family who have been through a seven-year medical odyssey.

While out for dinner during the evening of her third birthday, little Macy Menzie was climbing on play equipment when she had a fall and broke her left arm.

Once the bone was mended and the cast was removed, her mother Suzannah noticed Macy wasn’t using that arm. After several visits to specialists, and an MRI scan of her brain, it was revealed she had several tumours called optic pathway glioma.

Macy as a fair-haired three-year-old had to wear a brace just after diagnosis in an effort to keep her hand open and stop it seizing up.

Surgeons operated to de-bulk the tumours, but some had to be left as the risk of causing more mobility and vision loss was too high. So began a medical journey that has only offered three short breaks from chemotherapy since 2012. Suzannah recalls from her home in Hobart:

When she was diagnosed, the doctors told me it was going to be a long road...I thought I understood, but I had no idea how long.

Over the years, whatever the medical specialists have asked her to do, Macy has bravely accepted. One of her biggest struggles, Suzannah recalled, was when she no longer went under general anaesthetic to have an MRI scan. The idea of being inside the machine frightened her, but as always, she agreed to go ahead with it.

"That’s her Clownie," said Suzannah. "He goes EVERYWHERE with her. He’s had many operations just to keep him in good health. She’s had him since she was born."

“She is often scared, which is understandable,” Suzannah said. “But she does everything she is asked to do. She just faces it down and gets on with it.” 

Far and away

As traditional treatment options for the rare type of childhood brain cancer weren’t working, hope came in the form of a clinical trial when Macy, who is now legally blind, was seven. But it was only available in Melbourne. 

They spent the next two years travelling from their home in Hobart to the Victorian capital once or twice a month - some trips would be for a night or two, some for an entire week. Suzannah said:

The tumours kept increasing in size so we had no choice...Getting on and off planes is exhausting at the best of times, but with a sick child it’s just horrible.

“Plus, every time we left, I felt guilty about leaving my other daughter Matilda behind with friends and family. It was awful.”

"Mac" and "Tilda". Then, now and forever.

An added worry was the fact that germs can be circulated by aircraft air conditioning systems. Doctors had to ensure Macy’s blood levels and immunity were strong enough before each flight. 

Being away from home so much also meant leaving creature comforts and a solid support network which for Suzannah was her mum, and for Macy (now 10) her precious dog, a cheeky Moodle called Archie.  

Archie, a Maltese cross poodle, stands guard over Macy as she recovers from her cancer treatment.

"Macy didn't like missing school because she loves being with her friends," said Suzannah. "She's very clever so she is only actually a little behind in her reading because of her vision impairment."

Close to home

In 2017, The Kids’ Cancer Project recognised the great disparity of care available for children with cancer in Tasmania and provided landmark funding to Royal Hobart Hospital to establish a Children’s and Adolescent/Young Adult Cancer Clinical Trials Unit. And it is this unit that’s making a real difference for Macy and kids just like her. Associate Professor John Heath, Tasmania's only paediatric oncologist said:

[In Macy's case], what we're trying to do is prevent her from going blind, and potentially it's life threatening beyond that

The new Clinical Trials Unit has enabled Professor Heath to access through a compassionate-use program a number of revolutionary drugs for Macy that have not previously been listed.  

Read more: Behind the science: Associate Professor John Heath.

Macy and "Dr John" have a laugh during filming of a video for The Kids' Cancer Project.

“This is possible because we’ve been able to show the drug company that we will monitor her as though she’s on a clinical trial,” said Professor Heath. “We can do this because we now have the infrastructure, and particularly an experienced clinical trials coordinator, to collect the data and interact with the company with regards to side effects, etc."

So now a ten-year-old girl is benefiting from being on a drug that would be seen as cutting-edge in Paris, London or New York, but she’s able to do it at home in Hobart  

For Suzannah, who is a full-time carer for Macy while running her own leather homewares and accessories business from home, it’s life changing.

“The most important thing is getting the right medical care combined with support of family and friends,” said Suzannah.

Not having to travel interstate for Macy’s care is wonderful because it provides stability for both her and Matilda, and she doesn’t have to miss out on so much school.

“I think it’s amazing that The Kids’ Cancer Project is out there trying to do everything it can to make sure families can have local access to what we need to treat our children,” Suzannah said.

"I wish that more people realised the effect of their donations on real families. It is simply amazing."