All it took was a photo for Perth mum Emily Cross to know something was wrong with her little boy.
She never imagined that a white reflection in her then one-year-old son Peter’s eye would turn out to be a rare eye cancer that affects one in 15,000 births each year in WA.
At 16 months old, Peter is undergoing chemotherapy and still at risk of losing his eye to the disease.
“We saw this white reflection in his pupil, and we thought something’s not right here,” Cross said.
Peter was referred to the ophthalmology hub at Perth Children’s Hospital in January where a review while under anaesthesia revealed he had non-hereditary retinoblastoma.
About three or four cases of retinoblastoma are diagnosed in WA each year, and it usually affects children under five years old. The disease can be fatal if untreated, but new treatments and early intervention are proving lifesaving.
Peter was diagnosed with Stage D retinoblastoma due to the location of the tumour – which is in his retina – as opposed to the size.
Treatment options vary from full-body chemotherapy, intravitreal chemotherapy (an injection directly into the eye), arterial chemotherapy (an injection into the artery) and enucleation (the removal of the eye).
“Two days out of every month, Peter’s been having systemic chemotherapy just to make sure that it hadn’t escaped the eye, and there weren’t any seeds that had entered his body,” Cross said.
“He had his fifth cycle last week and he’ll have one more in June.”
As a result of the treatment, Peter’s tumour has caused his retina to detach, which Cross said could mean enucleation is back on the table as a treatment option.
“Unfortunately, one of the consequences of the location of the tumour is that it made a hole in his retina, and that was two months ago,” she said.
“It sounds at his last check that his retina has detached quite a bit, which means that while the overall treatment is going really well, mechanically, his eye has got challenges in there, which means that they may have to discuss enucleation.
“It’s quite heartbreaking. But because we caught things early, I think regardless of whether in the next month or so, we need to go down that enucleation pathway, he should live a relatively normal life.”
Peter’s diagnosis led to Cross deciding to take on the HBF Run For A Reason on Sunday.
“We’d never heard of retinoblastoma before, it was just not something that we even knew we needed to look for, which is part of why I dedicated to do the run for a reason – to be able to raise awareness about the signs and symptoms of retinoblastoma,” she said.
Symptoms of the disease include a white reflex in the pupil or an eye that turns.
“Peter had a little bit of a lazy eye as well which is also one of the symptoms of the cancer. So I signed up to raise awareness about that, share Peter’s story and also give back to the Perth Children’s Hospital Foundation,” Cross said.
So far, she has raised $8724 for the foundation and made it into the top-three individual fundraisers across WA.
Cross signed up for the 12-kilometre leg of the event and said she would be thinking of her son the entire distance.
“I think it’s going to be a little bit emotional, actually. It’s been such a motivator to do this for Peter, and it’s just been this incredible experience of training,” she said.
“I think of it often when I’m doing longer training runs, like I need to do this for Peter.”
HBF chief executive Lachlan Henderson said since launching in 2010, the event has raised more than $15 million for health and community organisations in WA.
“This event brings to light so many important stories,” he said.
“The commitment and generosity on display each year speaks to the strength of the WA community.”
Cross encourages all parents to trust their gut if they feel something is wrong with their child.
“If you see something in your child, get them checked, because I think the early intervention, the fact that we did take Peter for that check, was so critical,” she said.
HBF Run for a Reason begins at the corner of Hay Street and William Street and wraps up at Gloucester Park on May 24.
