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“We noticed a squint in his eye when he turned six months old, but the elders in our family told us not to worry. They said it’s common in infants and usually resolves as they grow,” said

Priyanka Shekhawat (name changed), a resident of Sonipat, recalling the early signs of retinoblastoma (RB) — a rare and aggressive eye cancer — in her younger son. The diagnosis came nearly

a year later, delayed by a lack of awareness. For the past year and a half, the Shekhawat family has been making near-daily visits to AIIMS Delhi, where doctors are treating the cancer that

had spread to both of the eyes of their three-year-old son. Advertisement “After multiple rounds of high-dose chemotherapy and targeted therapy, doctors had to remove his left eye,” Priyanka

told The Statesman. “Now they’re telling us the right eye may also need to be removed due to persistent redness. We’re praying that doesn’t happen. We’ve even held rituals at home, hoping

that God will heal him.” Advertisement But doctors at AIIMS urge parents to keep an open mind. They emphasise that while timely diagnosis is crucial, once a child is brought to the hospital

and retinoblastoma is detected, treatment begins immediately based on how far the cancer has spread. “Our priority is to save the child’s life,” said Dr Bhavna Chawla, professor of

ophthalmology at AIIMS Delhi. “Only then do we focus on saving the eye—and, if possible, the vision.” With timely intervention, doctors at AIIMS Delhi have been able to save the lives of

nearly 70 to 80 per cent of retinoblastoma patients over the past 15 years. “Still, we urge parents not to lose hope if eye removal becomes necessary,” said Dr Chawla. “Today, we have access

to high-quality prosthetic eyes that closely resemble the natural eye and can help children regain confidence.” Despite advances in treatment and the availability of cutting-edge

technologies, India still accounts for nearly 20 per cent of global retinoblastoma cases. The disease affects roughly one in every 15,000 to 20,000 live births. Experts attribute this high

burden primarily to delayed diagnosis and a widespread lack of public awareness. In an effort to raise awareness about this life-threatening but treatable disease, AIIMS Delhi held a public

lecture during Retinoblastoma Awareness Week earlier this month. Dr Chawla, along with a team of specialists, emphasised the importance of early detection and the need to educate communities

about the signs and symptoms of the disease. The session began with Dr Chawla urging parents not to overlook even the slightest symptoms in children under the age of five, such as redness,

a glowing or white spot in the eye, or a squint. “These early signs may appear minor but could indicate something as serious as retinoblastoma,” she warned. If left unchecked, the cancer can

grow to block the entire eye or spread to other parts of the body, including the brain, significantly increasing the risk to the child’s life. Doctors at AIIMS also emphasised the

importance of follow-up care, which varies depending on the stage at which retinoblastoma is detected and the treatment administered. In cases where the cancer is caught early and remains

localised, a simple laser surgery may be sufficient. “Such children often don’t require aggressive chemotherapy or radiation,” said Dr Rachna Seth, a pediatric oncologist at AIIMS, Delhi.

The follow-up for these cases is minimal. However, when the cancer has spread beyond the optic nerve, the treatment becomes more intensive. “We administer chemotherapy to ensure the child is

cancer-free, but that’s only the beginning,” Dr Seth explained. Follow-up care for such patients can last up to six months and is provided at special survivorship clinics in the hospital.

It includes regular blood tests to check for side effects and routine check-ups to assess the child’s growth, learning ability, and overall development. “Some chemotherapy drugs can impact

hearing or affect cognitive functions,” the doctor noted. Children are monitored for any developmental delays, including their ability to attend school, retain information, and perform

academically. At specialised biopsychiatric clinics, teams of experts assess a child’s intelligence, emotional well-being, and learning abilities to ensure there are no lasting effects from

the disease or its treatment. “We also check for any impact on the child’s heart, blood pressure, hearing, and ensure that they’ve received catch-up immunisations,” she added. “Our goal

isn’t just to cure cancer — it’s to make sure the child can live a healthy, fulfilling life after treatment.” Advertisement