Overcoming Retinoblastoma

Beckham’s Journey

Sonya and Corey Smith put their hearts into raising their children - Adelyn, Lexie, and Beckham, who is two. They describe the girls as loving and protective of their curly-haired baby brother, who is filled with energy and passionate about toy trucks. Photobooks of happy family adventures are throughout their home.
 

A day at the beach

“It was Beckam’s first time seeing the ocean,” Sonya recalled, “and he loved it. He had been playing in the sand.” At the end of the day, she noticed what looked like a grain of sand in Beckham’s left eye. Since they couldn’t flush it out, they decided to make an appointment with their pediatrician when they returned to Rochester the next day.


 

A startling discovery

Beckham’s pediatrician was also unsuccessful at removing the grain of sand, so he got them an appointment that day with a pediatric ophthalmologist. “The sand had vanished by the time we got to the ophthalmologist’s,” Sonya said. “But we decided on a complete eye exam to ensure everything was okay.” The result of the exam was life-changing.

“The ophthalmologist turned his back to compose himself.” Sonya continued. “He turned and delivered the news: ‘Your son has a large mass in his left eye, and he needs immediate treatment.’ Time stood still. I was beyond belief to learn that my two-year-old had cancer.”

The doctor recommended that the family go to Philadelphia to see a specialist experienced in managing childhood eye tumors called retinoblastomas. There are just a handful of these experts in the United States.
 

A call changes everything

While preparing to leave Rochester, they shared the news with close family friends who happened to know Flaum Eye Pediatric and Ocular Genetics Chief, Alex Levin, MD. Levin is an internationally renowned expert in diagnosing and managing rare eye diseases in children. They contacted Levin and explained Beckham’s condition. Levin asked them to get the Smiths in touch with him immediately.


“When we called, we were 80 percent going to Philadelphia,” Corey said. “Dr. Levin told us not to get in the car and that your baby will be okay. He asked us to meet him at the Hospital at 10:30 the next day to meet a phenomenal ocular oncologist named Dr. Vikas Khetan.”

Based on Levin’s reputation, passion, and persuasiveness, the Smiths decided to come to FEI and meet him and Khetan.
 

A meeting of hearts and minds

They were immediately impressed by Khetan’s kindness and friendly demeanor, physically getting right down to Beckham’s level to play with him while examining his eye. Khetan confirmed the bad news of retinoblastoma, an extremely rare tumor that usually affects children under the age of five.

“It is very malignant,” Khetan said. “Untreated, it is one hundred percent fatal. This is because the eye connects to the brain, and the tumor will travel into the brain along the optic nerve. Fortunately, retinoblastomas are very manageable with a 99 percent survival rate in the United States.”

Khetan is experienced in managing retinoblastoma, treating more than 500 of them during stops at clinics in Toronto, Philadelphia, and India, where he ran an ocular oncology clinic at Sankara Nethralaya Eye Hospital. Out of transparency, he told the Smiths that this would be his first retinoblastoma at Strong Memorial Hospital.

“It was a little surprising to learn that he hadn’t treated one in Rochester despite being here for more than two years,” Sonya said. “But we quickly learned that this is his passion, and he reassured us that he could care for Beckham in Rochester.”
 

The eye of the storm

Convinced in Kethan’s expertise, the Smiths realized that Beckham’s treatment would test their strength and resolve. Curing their son would take months and dozens of visits to the hospital. There would also be serious risks, including the possibility of surgical removal of Beckham’s affected eye.

“At that moment, we realized we were in the eye of the storm,” Sonya said. “We understood that it had to get worse before it got better.”

Beckam’s Group-C retinoblastoma was in the middle of a standard tumor classification system described by Khetan. Treatments range from laser and cryotherapy in mild stages to removal of the eye for advanced cases.


“When we develop our game plan, we keep the following in mind,” Khetan said: “Save the child, save the eye, preserve vision. It takes a couple of conversations with parents to review the possible outcomes. It can be difficult.”

After discussing Beckham’s case with collaborators, Khetan told the Smiths that he recommended intra-arterial chemotherapy. He proceeded to assemble a team from interventional radiology, pediatric oncology, anesthesiology, pharmacy, and FEI’s ocular genetics service.

“With a Group-C tumor, intra-arterial chemotherapy is very effective with a 75% to 80% chance of saving the eye with good vision,” Khetan said. “The procedure involves inserting a small probe through an artery in the child’s leg. Using real-time imaging, the interventional radiologist guides the device to a blood vessel located inside the eye. There, it delivers a drug that will hopefully kill the cancer.”

Khetan chose interventional radiologist Ashwani Sharma to perform the procedure, which targets an artery just a millimeter in diameter. It would require at least three rounds of treatment, with Beckham under anesthesia for two to three hours each time.

“Though this is technically more challenging, it lets us deliver a higher drug concentration directly to the tumor,” Sharma said. “The effect and the response of this is much better than systemic chemotherapy, and the total dose of the drug is much less, so there are fewer side effects.”

Sharma explained the risks of the procedure to the Smiths. He also told them that although he had performed many small arterial procedures, this would be his first time treating a retinoblastoma in a child. This had a sobering effect on the Smiths.

“It was a hard day for us,” Corey said. “But Dr. Levin came to the rescue and gave us a pep talk, saying that if we trusted Dr. Khetan, we needed to trust the team he had assembled. 
It was terrifying, but we felt that he was right, so we committed to the plan.”
 

A symphony of care

Besides Sharma’s role, a complex coordination of more than a dozen specialists rapidly ensued. This included a visit with ocular genetics counselor Celeste Wyman, who had to make sure that the cancer was not genetic. Heredity is possible in retinoblastoma. If there is a genetic link, a higher chance of future tumors exists. Fortunately, this testing proved negative.

As Sharma got prepared, the network grew. Frequent conversations occurred between pediatric oncology, anesthesia, ocular genetics, and pharmacy, which would prepare the drugs to be administered.

“We were very fortunate with our pharmacy,” Khetan said. “I discovered a pharmacist in the department who came to Rochester after working at Memorial Sloan Kettering in New York City. She was familiar with retinoblastoma and knew exactly how to make the drugs for the procedure.”

The communication from the team was amazing,” Sonya remarked. “We never had to prompt them. We were constantly in the loop, and the back and forth between Dr. Khetan and Dr. Sharma gave us confidence. They provided all kinds of help and even introduced us to a family whose daughter with a tumor similar to Beckham’s had an excellent outcome.”
 

Full speed ahead

Within 10 days, which included dozens of appointments, tests, texts, emails, and phone calls, the team was ready. With both parents present, Beckam had his first treatment.
“The procedure was flawless,” Sonya said. “Everybody was just so attentive and detail-oriented.

They did their best to make a tense and emotional time more manageable. We were able to be with him as much as possible, and anesthesiology let me be part of the pre-operative process to make it easier for our son. Beckham was living this and hated it like any 18-month-old would.”

It took an entire day and required an overnight stay at Golisano Children’s Hospital. But after checking out, the Smiths returned to their home 20 minutes away and did not have to travel for follow-up visits between chemo sessions.

Best of all, a post-procedure examination showed that the treatment was working! Between the first round and two additional sessions of chemo, the mass reduced by almost 70 percent. After each treatment, the Smiths noticed Beckham returning quickly to his normal energetic self without any side effects.

“Being able to stay close to home has been a blessing,” said Sonya. “Both of us were able to be at Beckham’s appointments, and the girls could be part of the process, too. It kept us together as a family, and we were able to remain close to our support network of family and friends.”
“If Beckham had to travel for the same care, it would include at least nine to twelve visits,” Khetan said. “This puts so much stress on families. Now, there is no longer a need to do this. People from throughout the region can come to Rochester, receive the gold standard of care, and go home.”
 

Success meets optimism

After the third round of chemotherapy, Khetan was satisfied that Beckham would not need an optional fourth treatment. Instead, he addressed the tumor with laser therapy. Here, he vaporizes the remaining tumor cells he hopes the chemotherapy has killed.

“It still involves putting Beckham under anesthesia,” Khetan said. “The laser flattens the tumor. At this point, the cancer cells are very dormant, but a few might still be active and capable of dividing. So, we need to be cautious. While he is under anesthesia, we do scans and compare the mass to previous visits to track our progress.”

What they learn from the scans determines the frequency and types of future treatments. Beckham has received monthly laser treatments beginning in August 2024. Khetan said that these may continue through April or beyond, depending on the response. He is positive about the prognosis.

“I am hoping that we will drive the retinoblastoma into complete remission,” Khetan said. “The odds are excellent that we will save the eye with good function. In the corner of his vision, where the tumor was, there will be a blind spot. But in combination with vision from his unaffected right eye, he should get along very well.”

If the laser treatments work as expected, Beckham will require fewer visits to monitor his eye. He may eventually only require annual check-ups. According to the American Cancer Society website, the five-year survivor rate for retinoblastoma is high. Remaining in remission over this period means that recurrence is much less likely afterward.

“It’s fun watching Beckham grow up. When we started, it was high-fives and playing with his trucks. Now he’s putting sentences together. Treating children like Beckham is special to me. You get to know the families and become part of their stories.”

A pause and thanks

The Smiths expressed gratefulness for their care team throughout their son’s treatment, including sharing their story in a video designed to bring awareness to retinoblastoma and the services the Eye Institute provides. They also attended a high-profile fundraising event to benefit FEI.

“We’ve just felt so much gratitude,” Sonya said. “For how Beckham has responded to treatment, and how well he is doing, and how closely they monitor him. We feel like the luckiest parents on earth to go home with our son. Dr. Khetan is so humble. He’s the reason we stayed, and we want families faced with retinoblastomas to know that they don’t have to leave the state.”

“I can’t say enough positive things about Flaum and the hospital,” echoed Corey. “If we had to leave to get care somewhere else, we would have to give all that up, and it might have been a different outcome. It was tough being first, but I hope that we helped pave the way for the next family.”

Beckham continues to respond well to treatment. As Khetan stated, the team hopes to have the cancer in full remission while saving Beckham’s eye and his vision.
 

Zachary Laird | 11/20/2025