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Jude retinoblastoma Aparna Ramasubramanian, MD, a pediatric ophthalmologist and ocular oncologist, Children's Wisconsin

The boy and his doctor: How a rare cancer led to an unbreakable bond

Aubrey Stephens still remembers the day well. How could she not? It was the day everything changed.

Jude retinoblastoma Aparna Ramasubramanian, MD, a pediatric ophthalmologist and ocular oncologist, Children's WisconsinAugust 9, 2018. A beautiful, warm summer day. For the last 12 hours, she and her 4-month-old son, Jude, had been at a children’s hospital in Louisville, about an hour northwest of their home in Bloomfield, Kentucky. 

The night before, Jude had spiked a fever of 104 degrees Fahrenheit. A trip to their local emergency department and then a visit with their pediatrician didn’t uncover anything. Now they were in a city they didn’t know, undergoing test after test after test, and still searching for an answer. 

Just as they were about to be sent home, one of the doctors noticed that Jude’s right eye wasn’t focusing. She ordered an MRI and told them they’d have results in a few hours. Not 30 minutes later, she was back. 

Jude was asleep in Aubrey’s arms when the doctor told her they had found a tumor in his eye.

“She said that this type of tumor was always cancerous,” said Aubrey. “I honestly didn’t believe her.”

A little bit later, after the doctors changed shifts, a new doctor came to see Aubrey. 

“The new doctor came in the room and looked me in the eye and said, ‘I cried before I came in here. I’m sorry but there is no other way to say this, your baby has cancer.’”

That doctor scheduled an appointment for Jude with Aparna Ramasubramanian, MD, a pediatric ophthalmologist and ocular oncologist, for the next day.

A special calling

Jude retinoblastoma Aparna Ramasubramanian, MD, a pediatric ophthalmologist and ocular oncologist, Children's WisconsinJude was officially diagnosed with bilateral retinoblastoma, cancer in the retina of both of his eyes. Retinoblastoma is extremely rare, with less than 300 cases a year in the United States. Even rarer are doctors who specialize in it. Dr. Ramasubramanian (everyone calls her Dr. Rama) is just one of a handful of such doctors in the United States. In fact, it was that rarity and lack of dedicated providers that first got Dr. Rama interested during her ophthalmology residency in India.

“I've always loved ophthalmology and I always knew I wanted to work with kids,” said Dr. Rama. “Retinoblastoma is a very rare tumor and very few doctors specialize in it, but it’s also very treatable. So, it was a disease I felt I could really make a difference in.”

While true for all cancers, early detection is especially important for retinoblastoma. A lung cancer tumor may take, on average, 160 days to double in size. A kidney cancer tumor, 460 days. But a retinoblastoma tumor can double in size every 14 days.

“Obviously, the eye is a small organ, so when the tumor doubles it can rapidly destroy vision,” said Dr. Rama, who is also an associate professor of ophthalmology at the Medical College of Wisconsin. “And if untreated, it can spread very fast to the brain, bones, liver, anywhere. It’s 100 percent fatal if not treated.”

But with early detection and treatment, the survival rate is upwards of 97 percent. The clearest early warning sign is a white or yellow glow in the pupil.

“You know when you take a picture and you sometimes see a red glow in the eyes, that’s good,” said Dr. Rama. “If you see a yellow glow, that could be a sign of the tumor.”

In fact, Dr. Rama once had a family whose child was undergoing treatment for retinoblastoma. One day the mom was watching a video that a family friend had posted on social media. She thought she noticed a yellow glow in one of the kid’s eyes and sent the video to Dr. Rama to confirm.

The very next day, that child was in Dr. Rama’s office.

And the following day, his eye was removed.

“This mom absolutely saved his life,” said Dr. Rama.

Trials and tribulations

Jude retinoblastoma Aparna Ramasubramanian, MD, a pediatric ophthalmologist and ocular oncologist, Children's WisconsinThankfully, Jude’s cancer was caught relatively early and he began treatment right away. It hasn’t really stopped since.

“Jude has a very complicated story. He’s had continuous treatment for more than five years,” said Dr. Rama. “But he and his family have immense spirit. They are just so positive.”

To date, Jude has undergone six months of full-body chemotherapy, countless rounds of targeted chemotherapy, a chemotherapy disc, a radiation disc, proton radiation and chemotherapy injections. It’s been a long and tough five years. But despite all he’s been through, Jude and his family’s positivity and hopefulness has never wavered.

“He is a very positive kid who loves to make people laugh,” said Aubrey. “He can see the bright side of anything.”

“He is amazing. He's my little buddy,” said Dr. Rama. “I’ve learned so much from Jude because of his attitude.”

When Jude was 2 years old, the tumor in his right eye was no longer responding to treatment. He had to have it removed and Dr. Rama fitted him for a prosthetic. In true Jude fashion, on the side of the glass eye, there is a small drawing of Spider-Man.

“That's his superhero eye,” said Dr. Rama.

Cross-country care

Jude retinoblastoma Aparna Ramasubramanian, MD, a pediatric ophthalmologist and ocular oncologist, Children's WisconsinIn July 2019, nearly a year into treatment, Dr. Rama had some difficult news to share with Jude and his family. She was moving to Phoenix.

“She told me we could follow her out there or she could arrange for us to see a doctor in Cincinnati. She told me to take a few days to think about it and talk about it with my husband, Shane,” said Aubrey. “While still in the hospital, I sent him a text and we both agreed we didn’t need to think about it.”

For the next four years, Jude and his family made the more than 1,700 mile journey to Phoenix just about once a month. They’d check-in with Dr. Rama, make sure everything was still looking good and receive treatment as necessary.

“Dr. Rama has always treated Jude as if he were her own. At every appointment, Jude asks if she will carry him back to the operating room. It is a huge comfort to watch her walk down the hall with him in her arms where he feels safe and comfortable,” said Aubrey. “There is no other doctor we would want taking care of Jude.”

And so in the summer of 2023, when Dr. Rama came to Children’s Wisconsin, Aubrey and Shane didn’t hesitate. They were coming too.

“One of the things that I love most about Dr. Rama being in Wisconsin is our ability to drive rather than fly. This allows our whole family to stay together, which is so important to us and gives Jude more support. His big sister has always been a huge comfort and support to him, despite being only 11 months older,” said Aubrey. “We have had a great experience with Children’s Wisconsin. Jude usually has the same nurse, nurse Amy, and he adores her and looks forward to seeing her so that they can talk about football. All the staff are so friendly and helpful.”

Jude is actually not the only child in Dr. Rama’s care who followed her to Children’s Wisconsin. Her bond with her patients is so deep that there is no distance too far.

As soon as she arrived at Children’s Wisconsin, Dr. Rama established a Retinoblastoma Program within the MACC Fund Center for Cancer and Blood Disorders. This multidisciplinary team includes oncologists, neurosurgeons, pathologists, geneticists, social workers, pharmacists and child life specialists.

Facing the future

Jude retinoblastoma Aparna Ramasubramanian, MD, a pediatric ophthalmologist and ocular oncologist, Children's WisconsinLast November, there was a fear that Jude was going to lose his left eye, so Dr. Rama quickly arranged a Make-A-Wish for him. He wanted to go to a beach and an aquarium with his family. That’s Jude — thinking about his family over himself.

Thankfully, for now his left eye has stabilized and he’s still able to see and read. Otherwise, he’s very much your typical 5-year-old boy. He loves video games, building things, playing with Play-Doh and sports — especially the Dallas Cowboys (sorry about that). He’s living in the present and taking joy in the simple pleasures, like seeing fish or eating Subway in an airport. As for what the future holds, Aubrey doesn’t know. And she’s fine with that.

“Like all kids, Jude has dreams about what he wants to be when he grows up. If Jude can see or if he is blind, he will handle it with all the strength and faith that he has handled everything else,” said Aubrey. “We don’t worry about Jude.”