The girl with one eyelash

Wednesday 24 October, 2018

Hayley with one eye lash

Hayley’s strength at some of the toughest times would have put many an adult to shame,” Andrew, father of Hayley (pictured).

Hayley was just six-years-old when she was diagnosed with Rhabdomyosarcoma, a rare cancer located in her nasal cavity. She immediately began treatment to destroy the tumour, which made all of Hayley’s hair fall out… eventually.

“Hayley’s treatment was a combination of chemotherapy and radiation,” Andrew said. “The chemo got most of Hayley’s hair and then the radiation got rid of the rest of it.

“Then we noticed that for whatever reason, there was one eyelash left. Three weeks of one eyelash there by itself.”

Andrew with his youngest daughter Hayley
Andrew with his youngest daughter Hayley

The first sign that something wasn’t right with Hayley was when one of her eyes turned into the middle. Hayley’s parents, Andrew and Leia, took her to the doctor who recommended they take her straight to The Royal Children’s Hospital.

“All that week was blood tests, a biopsy, a full body MRI, CT scans and more tests,” said Andrew.

Apart from double vision, Hayley didn’t feel sick, so explaining to a six-year-old why she needed to be in hospital was challenging. So many times that week Andrew and Hayley had the same conversation.

Hayley: Why do I have to do this?

Andrew: To make you better bub.

Hayley: But I’m not sick.

After chemotherapy, Hayley began 28 days of radiation over five and a half weeks. Radiation involved having a plastic mask heated and moulded to the shape of her face.  

“Getting ready for radiation was tough,” Andrew recalled. “They put the mask on her and clipped down the sides so that she couldn’t move. Then everyone was asked to leave the room. Hayley was anxious and scared and crying.

“It was supposed to be a 5-10 minute procedure, but she was too upset to be still enough. After 15 minutes they said they’d have to reschedule and give Hayley a general anaesthetic,” Andrew said.

“Hayley said “no!” and so we tried again.”

Natalie, Hayley’s big sister, had taken the day off school to come and support her. Andrew took Natalie into the next room, hoping that just Leia could settle her.

“Natalie and I could hear Hayley screaming,” he said.

“About 40 minutes into this 5-10 minute procedure, the idea came up for Natalie to sing to Hayley through the intercom.

“Hayley nodded and the girls agreed on a song. She lay down again, the mask again clipped into place.

“Natalie went into the technician booth and they showed her the button to hold so that she could talk to Hayley.

“Then she started singing Cyndi Lauper’s True Colours. The first line, “You with the sad eyes….”

“Both Leia and I were an emotional mess. I’m not sure which one of us was holding up the other. Maybe both, as we held each other and bawled.

“Hayley was so still, so calm, so good. We will always be grateful to Natalie for that day.”

Hayley with one eye lash
When one of the nurses learnt of Hayley’s love of cat girl, she decorated her mask for her.

“What Hayley went through at such a young age is more than anybody should ever go through in a life time. I am so proud of how well she dealt with it all.”

The harsh cancer treatment took its toll on Hayley. She lost not only her hair, but a lot of weight, muscle condition and her independence.

“We had to get a wheelchair and a stroller because Hayley was too tired to walk. She needed help at the toilet. Bath. Getting dressed. Food.

“We were so incredibly proud of her. She did everything she was asked. She said you didn’t want to, but she did it anyway.”

Hayley with family

“There’s more than 750 children in Australia diagnosed with cancer each year and around 16 percent of them lose their life,” Andrew said.

“Every one of these kids deserve everything wonderful that comes their way. I love the idea of less painful treatments – quicker, faster, more effective, with less side effects. Or none preferably.

“By supporting Cancer Council today and supporting life-saving research, you can make that possible for other children like my Warrior Princess, Hayley.”

Donate today to research to find gentler treatments for children like Hayley.

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