Grace’s Glow Story

Diagnosis: Retinoblastoma

In 2004, when Grace was almost five months old, we were at my parents house preparing for my brother’s wedding. While changing Grace on the bed under the light, I noticed her left pupil did not look right. It looked almost translucent, rather than a solid black. We had recently purchased a digital camera and noticed ‘the Glow’ in Grace’s left eye in the photos from my brother’s wedding that same weekend.

We made an appointment to see an optometrist on the Monday after the wedding, and were referred to a pediatric ophthalmologist who we were able to see three days later.  This ophthalmologist diagnosed Grace with retinoblastoma. Later that same day we saw an ophthalmologist who specializes in retinoblastoma. He performed an EUA the following day, confirming that it was bilateral retinoblastoma. 

Grace had four tumors in her left eye, and three much smaller tumors in her right eye. She commenced a monthly course of chemotherapy over the following six months.

Just before Grace’s first birthday, more tumors had started to grow. She underwent radiotherapy – twenty sessions over four weeks, all under general anesthetic. There has been no further growth of tumors in her right eye since radiotherapy.

Over the next few years, Grace was treated by Dr John McKenzie and Dr James Elder at the Royal Children’s Hospital in Melbourne, Victoria, Australia.

She had monthly EUA’s, and cryotherapy to her left eye. The tumors started seeding, there was bleeding in that eye, and we realized we were fighting a fruitless battle as Grace had no vision in that eye. In February 2006, when Grace was a little over two, her left eye was enucleated, and her retinoblastoma was ‘cured’.

Grace is now a very fit, healthy and active seventeen year old. Her monocular vision has not held her back in any way.  Grace’s chosen sport is rowing, although she also loves AFL and cricket. She is a passionate supporter of the Geelong Cats (AFL team). Grace is currently in her final year of high school.  She is an excellent student, winning numerous academic awards and is on track to getting the marks she requires for her chosen university degree – Biomedicine at the University of Melbourne.  She has plans to further study to become a sports physiotherapist (ideally with an AFL team). She loves music, crochet, going to the gym, hanging out with friends and cooking. She now has her drivers license and loves to drive! 

Grace has yearly check ups with her ophthalmologist. She hates the dilating eyedrops! She also has an MRI and thyroid ultrasound every 1-2 years to check for any other malignancies related to the RB1 gene. 

I am forever thankful that my husband and I went with our gut and took Grace to have the white glow checked out. We had never heard of retinoblastoma, but have certainly seen and heard lots of stories similar to ours over the last 17 years. Had we not promptly gone to have Grace’s eyes assessed, the cancer would likely have spread and she may not have the excellent vision in her right eye that she has now. If you notice ‘the Glow’ in your child’s eye, please do not hesitate to take them to your doctor. If you notice ‘the Glow’ in another child’s eye, please urge the child’s parents to take them to a doctor. It is so much better to have a false alarm and be reassured that all is fine, than to be told your child has an aggressive cancer and may lose their vision.