Little Prerna poses a challenge

Prerna with Mohd Javed Ali

Twenty-ninth of May 2009 - the day we first met Prerna along with her parents at L V Prasad Eye Institute. While taking photos of her on her first birthday a few days earlier, a guest had noticed an abnormal white gleam in her left eye. The ophthalmologist who examined her revealed the dreaded news to her parents that Prerna had eye cancer! The parents rushed to LVPEI Hyderabad from a remote place in the western part of the country, in a state of acute distress.

Prerna could barely perceive light with her left eye when she was first seen in the Children’s Eye Cancer Centre at LVPEI, which is supported by Sightsavers, UK. An examination under anesthesia revealed a large intraocular tumor filling the left eye, she had advanced retinoblastoma. However, the tumor was still confined within the eye and there were no signs of it having spread to other parts of her body, thus it was not life-threatening yet! Salvaging her eye was not possible, so the doctors decided to enucleate (surgically remove) her left eye to save her life.

Sadly, the family did not come back for the surgery and despite all efforts including repeated telephone calls and counseling by doctors, the parents refused to come for the treatment. Finally, in December 2009 doctors were pained to see little Prerna back with acute pain and discomfort. Her left eye was protruding with redness and tenderness. The parents complained that she had not been eating, was vomiting and unable to walk properly. A CT-scan revealed that the tumor had not only spread to the optic nerve but also to the brain. Her bone marrow was positive for tumor deposits. From a potentially curable cancer 7 months ago, now there was clearly risk to Prerna's life.

She was started on chemotherapy consisting of intravenous injections of three potent anticancer drugs with proven efficacy. She underwent nine cycles of chemotherapy at 3-week intervals under the careful supervision of ocular and pediatric oncologists and trained pediatric oncology nurses. Prerna's intraocular tumor regressed considerably and the intracranial (brain component) tumor too resolved completely. The bone marrow showed negative for tumor deposits. She is currently undergoing a multimodal aggressive protocol which would include surgery, followed by radiotherapy and extended chemotherapy for 12 cycles, in the hope of saving her life.

The parents tearfully confided that the family's relatives had strongly resisted surgery earlier. Prerna's father Praveen recalls, "My close relatives warned me and tried hard to convince me that doctors remove eyes only for research! A friend suggested someone who prescribes herbal medicines and magical potions. This person assured me that a cure was guaranteed once I bought his expensive magical potions!"

"When Prerna started getting worse in December, I realized my foolishness in putting my daughter in such a mess!" After a long pause the father continued sighing with sadness and guilt. "Why did I do this to my little princess? Why did I allow that terrible disease to almost kill my daughter? My ignorance led my family into this!"

Not all patients with eye cancer do well despite reaching caring hands at the right time. Widespread ignorance about retinoblastoma, low socioeconomic status, superstitious beliefs and quacks quick to prey on anxious families pose numerous hurdles to the right to life of little patients! Apart from medical challenges we also need to fight and overcome these social challenges. This is what Prerna taught us!

- Mohd Javed Ali, Consultant, Ocular Oncology