Written by Mom: Robyn Wakefield
Our son Emmett was just two and a half years old when our lives changed forever.
It started with something so small that, at first, I almost dismissed it.
Emmett was sitting near the glass bifold doors in our home when I noticed something unusual about his left eye. There seemed to be a strange reflection in it. When I moved, the appearance changed, so I assumed it was simply the light catching his eye at a particular angle. But I saw it again, so I mentioned it to my husband, and he immediately told me that he had noticed the same thing.
Neither of us knew what it meant.
My husband searched online for information about unusual reflections in a child’s eye and came across something that would ultimately save Emmett’s life: taking a photograph using a flash.
So we did. When we looked at the photograph, the Glow was there. That photograph changed everything.
The very next day, I took Emmett to an optometrist, Dr Aan Mary Joseph. Examining a two-and-a-half-year-old can be challenging, particularly with the equipment available in a regular optometry setting, but the optometrist recognised that something wasn’t right.
She didn’t dismiss it. She didn’t tell us to wait and see. She immediately referred us to the hospital.
The following day, Emmett was referred to Sydney, where he was diagnosed with Group C retinoblastoma. The cancer was still contained within his eye, although there was significant (and very stubborn) seeding.
We went from being a completely ordinary family worrying about an unusual reflection in our toddler’s eye to suddenly learning words we had never expected to hear: retinoblastoma, tumour, chemotherapy, seeding and cancer.
Emmett’s treatment journey began, and our lives became centred around hospitals, appointments and travelling between Canberra and Sydney. For our family, living in Canberra has meant that accessing the specialist care Emmett needs has involved regularly travelling between cities. What might look like a straightforward appointment on paper can mean hours on the road (seven hour round trips), disrupted routines, work and childcare arrangements, and the emotional exhaustion that comes with repeatedly taking your child back into hospital.
But through all of it, Emmett has remained Emmett. He is funny, determined, loving and incredibly resilient. He has faced procedures and treatment that no child should ever have to experience, yet he continues to find reasons to smile, play and be the little boy he is.
One of the people who has played an incredibly important role in Emmett’s care is paediatric ophthalmologist Dr. Michael Jones. Having people with the expertise and dedication to care for children like Emmett has made an enormous difference to our family throughout this journey.
Looking back, I often think about how easily that first sign could have been missed. There was no obvious warning that something as serious as cancer was developing inside our little boy’s eye. It was just a reflection. A strange little flash of white.
That is why I now tell everyone I can about the Glow.
I want parents to know that if they ever notice an unusual white or yellow reflection in their child’s eye, particularly in a photograph taken with flash, they should not ignore it. It may be nothing, but it could also be a sign of retinoblastoma.
Trust your instincts. Take the photo. Get it checked.
For us, recognising the Glow meant Emmett’s cancer was found while it was still contained within his eye. We will forever be grateful that we noticed something wasn’t right and that the people we turned to listened and acted quickly.
But our experience also changed something else in me.
I became increasingly aware of the enormous gap between where we live and where our son needs to receive specialist paediatric cancer care.
We live in Canberra, the nation’s capital, yet there is no dedicated paediatric oncology and haematology unit here. Families like ours are required to travel to Sydney for specialist treatment and care.
That experience is what led me to begin advocating for change. I created Closer2Care.
Through Closer 2 Care, I am working to raise awareness of the need for paediatric oncology and haematology services in Canberra…not because I want to change the incredible care Emmett has received, but because I believe families should have access to more of that care closer to home. www.closer2care.com
Our story has shown me that cancer doesn’t just affect the child who receives the diagnosis. It affects the whole family. It affects parents who have to balance work, siblings, travel and treatment. It affects families who spend hours travelling to appointments while carrying the fear of what the next appointment might bring. And it affects children who should be spending their early years simply being children.
Emmett’s story began with a Glow. That tiny reflection led us to a diagnosis we never imagined we’d receive. It led us through an experience that has changed our family forever. And now, I hope his story can help another family. Because if sharing Emmett’s Glow means another parent recognises that something isn’t right and seeks help sooner, then telling our story is worth it.
See the Glow. Act early. Save sight. Save lives. And perhaps most importantly, remember that sometimes the smallest sign can be the one that matters most.