The mother of a two-year-old boy who lost one eye to a rare form of cancer suggests that parents monitor their kids by taking pictures of them using a flash because this is frequently the first and only sign that a tumour is forming at the back of the eye.
Rocky, Kara Sefo’s son, was a “dream baby,” who breastfed easily, played vivaciously, and slept soundly.
Because of this, the Newcastle, Australia, events manager who lives two hours north of Sydney wasn’t too alarmed when, in late February 2018, her four-month-old started exhibiting a lazy eye regularly.
Ms While turning one evening to do the dishes, Sefo, 43, noticed a marble-like reflection in her son’s left eye. Her instincts warned her that something much worse was happening.
Ms On June 21, 2018, a Wednesday, Sefo learned the heartbreaking news that Rocky had retinoblastoma, early-stage cancer, growing behind both eyes. He had been eight months at the time.
When Rocky was just two years old, his left eye was removed in March 2020 because cancer in his tiny body had not been eradicated despite months of chemotherapy, laser therapy, and cryotherapy. With the diagnosis, the conflict began.
“I distinctly recall doing the dishes one evening while he was having fun and noticing a spot that resembled a marble or cat’s eye. According to Ms. Sefo, “Looking back, I realise it was the retinoblastoma being hit by light,” she told Daily Mail Australia. “.
Rocky’s lazy eye was discovered by a chiropractor performing a routine examination on him at six and a half months, who then suggested that Ms Sefo take Rocky to their family doctor for a checkup.
To rule out any underlying problems, Rocky was sent to an ophthalmologist, who found nothing unusual.
In his left eye, which had an uncontrolled tumour in the retina, the part of the eye that receives light at the back, an ultrasound revealed that he had 90% vision in his right eye but only 10% in his left.
Medical professionals started Rocky’s six-month chemotherapy treatment plan right away to cure the illness before it spread to his brain and central nervous system.
Ms They told us honestly that we would lose him if that occurred, Sefo recalled. “.
“I just broke down in tears because I think deep down I always knew there was something wrong. When I entered the oncology ward and noticed all these kids with tubes attached, I distinctly remember feeling as though I was dreaming. “.
When a child is younger than three, a rare form of cancer called retinoblastoma can appear at the back of the eye.
Cancer is known to be caused by a defective RB1 gene, which can be inherited from one or both parents or develop independently in the child after birth, despite the specific causes of the disease still being unknown to scientists.
One of the 750 or so Australian children under the age of 14 who receive a cancer diagnosis each year is Rocky.
Retinoblastoma symptoms wax and wane, appearing and then abruptly disappearing, and are frequently misdiagnosed as common pediatric infections, making diagnosis challenging and often resulting in lengthy delays in discovering the condition.
Due to the disease’s lack of progression to the optic nerve, brain, or spinal cord, children with retinoblastoma have a high chance of surviving. Early detection is, therefore, crucial as it can mean the difference between life and death.
Ms Sefo advises parents to frequently take pictures of their kids with the flash on because the most apparent danger sign is a pupil that turns white or yellowish instead of red when exposed to light.
Other signs of the condition include eyes drooping or staring, a hot, painful, or enlarged eyeball, and cloudiness in the iris, the coloured part of the eye.
Ms On the day Rocky was diagnosed, Sefo experienced excruciating stomach pains, which she attributed to her stress and anxiety over learning such dire news.
She felt so sick that she could not move and was taken to the emergency room. Her appendix was removed as soon as doctors realised it was about to explode.
She continued, “And Rocky was starting chemo, so it made things even more difficult. I couldn’t even pick him up. “.
Rocky began a less invasive course of treatment that included monthly laser and cryotherapy sessions to eliminate the resistant tumours that persisted behind his left eye following six months of chemotherapy.
But by September 2019, the disease had spread too far, and Rocky was forced to undergo a three-month round of chemotherapy, administered right into his eye.
Retinoblastoma, a rare form of pediatric cancer, develops when abnormal cells in the retina—the part of the eye’s back that detects light—grow out of control.
It typically affects children under three and can affect one or both eyes.
While the precise causes are unknown, scientists know that a defective RB1 gene, which can be inherited from one or both parents or develop independently in the child after birth, is associated with cancer.
750 Australian kids between the ages of 0 and 14 receive cancer diagnoses every year.
Regarding the prevalence of childhood cancer among the G20 countries, Australia has one of the highest survival rates in the world, with an average five-year survival rate of 84 per cent, trailing only Germany, the United States, South Korea, and Canada.
Leukemia is the second leading cause of pediatric fatalities in Australia, accounting for 22% of cases, and neuroblastomas, including retinoblastoma, account for 13% of cases. Thirty-nine per cent of cases are cancers of the central nervous system, most frequently brain tumours.
Since the disease has not yet reached the optic nerve, brain, or spinal cord, long-term survival rates are high; therefore, early detection can mean the difference between life and death.
Rocky’s medication abruptly stopped working in February 2020, even though it appeared to be working; as a result, doctors were forced to schedule an eye removal surgery for late March.
We made an effort to view it as the conclusion of one chapter in Rocky’s life and the start of another, according to Ms Sefo.
She said, “This experience has taught me how powerful a mother’s intuition is; you just know something isn’t right on some level.”.
Ms Sefo and her family described the procedure as “extremely stressful,” but Rocky, whom she refers to as her “little champion,” carried on as usual.
She claimed that the patch he had to wear after removing his eye was what most worried him and that he was back to normal once it was taken off.
Rocky’s battle with cancer has impacted Ms Sefo’s journey.
One hour before removing Rocky’s eye, she snapped a photo of him with the flash to share with other Australian families about retinoblastoma. Now, she is a vocal supporter of kids with cancer.
She added that, per a California statute, every child’s eyes must be dilated at six weeks of age to detect this other than with the camera flash.
Ms To pass legislation similar to this, Sefo intends to start a campaign in Australia.
“The test they run in the GP clinic is just not good enough,” she continued. “Something needs to be altered. “.
Take a flash photograph once a month in the interim. The test we currently have is the best.