“Hi, Ava!” 5-year-old Nova Nolan greeted her friend in a Children’s Wisconsin waiting room with a big hug and a homemade bracelet she’d made just for her. “You’re almost in the Eye Clinic.”
“I already have pictures of my tumor,” said 4-year-old Ava Kiplinger.
“Are you excited to see Dr. Rama?” asked Nova, using patients’ nickname for Aparna Ramasubramanian, MD, an Ocular Oncologist and Director of the Retinoblastoma Program at the MACC Fund Center for Cancer and Blood Disorders.
“Yes, and I’m the first one in the Sleepy Room today!” said Ava.
The “Sleepy Room” — what the girls call the operating room where they get anesthesia before eye exams and cancer treatments — was one of the shared experiences that forged a firm friendship between the two girls and their families. Despite living more than 1,400 miles apart, the Nolan and Kiplinger families have bonded over their similar cancer journeys and continue to support each other through the treatment process.
Every month, Ava’s family drives in from St. Louis and Nova’s family flies in from Phoenix to see Dr. Ramasubramanian, one of the country’s leading specialists in retinoblastoma, a rare and aggressive type of eye cancer.
And one of the special perks of the trip, when schedules align: getting to see each other.
“It’s a neat story,” said Kimberly Mayer, RN, BSN, Retinoblastoma Nurse Coordinator at Children’s Wisconsin. “There are some families that connect on social media. They talk about what they’ve gone through, resources that they’ve used, things like that. But this kind of bond is not as common. Because the girls are the same age and went through a lot of the same things, I think that makes it such a special bond.”
In the summer of 2022, Nova and Ava were both diagnosed with unilateral retinoblastoma in their left eye.
“Retinoblastoma usually occurs in kids less than 5 years of age,” said Dr. Ramasubramanian. “Untreated, it’s 100% fatal. It’s one of the most rapidly growing tumors in the body. But with current day treatment, we have more than 99% survival because it’s usually localized to the eye.”
Because of Dr. Ramasubramanian’s expertise — she is also an Associate Professor of Ophthalmology at the Medical College of Wisconsin — Children’s Wisconsin has become a destination for children with this rare condition. The MACC Fund Center for Cancer and Blood Disorders sees more than 50 retinoblastoma patients a year from across the country. Some of the patients, like Nova and Ava, started seeing Dr. Ramasubramanian when she was based in Arizona and then decided to follow her when she joined Children’s Wisconsin in 2023.
“Dr. Rama is just special,” said Nova’s mom, Taylor. “There’s just something about her. She’s so kind and helpful.” For Nova and Ava, treatment included intra-arterial chemotherapy, which targets treatment to the eye while sparing healthy tissue.
“When the tumor is only in one eye, we don’t give standard chemotherapy through the veins because there’s no point in giving chemo to both eyes or to the whole body,” said Dr. Ramasubramanian. “So, what we do is we go up the vessel in the leg, all the way up to the artery that supplies blood to the eye, and we give chemo directly to the affected eye.”
While seeing Dr. Ramasubramanian in Arizona, Nova and Ava participated in a clinical trial for Chemoplaque, a device temporarily glued to the eye’s surface that releases chemotherapy medicine over a six-week period. At the time, Dr. Ramasubramanian’s program was the only site in the United States offering Chemoplaque, and now Children’s Wisconsin is in the process of offering the treatment through a Phase II clinical trial.
The Chemoplaque treatment was so successful for both Nova and Ava that it shrunk most of their tumor. They later received chemotherapy injected into the fluid of their eye — known as intravitreal chemotherapy — to control some small residual disease. They have also received laser therapy and cryotherapy, which uses extreme hot and cold temperatures to kill cancer cells.
The treatment plan has been effective.
“Both girls are in remission and are doing really well,” said Dr. Ramasubramanian.
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Accessing this specialized care hasn’t been easy for either family. Ava’s family moved from Arizona to St. Louis to be near relatives and within driving distance of Dr. Ramasubramanian. Children’s Wisconsin helps Nova’s family schedule travel through Miracle Flights, which offers free flights for children who need to travel long distances for medical care. While in town, both families stay at the Ronald McDonald House.
That’s where Nova and Ava first met in the fall of 2024. As the girls chatted and played in the playroom, their moms discovered that both families were in town to see Dr. Ramasubramanian. Then the moms learned that they had a lot in common, too: Both were named Taylor, were around the same age, and were from the Phoenix area.
“It was like immediately, ‘I want to be friends with you,’” said Nova’s mom.
The girls found their own common ground — including a mutual distaste for eye drops. But they had a different view on undergoing anesthesia, a routine part of their visits to receive cancer treatments and allow Dr. Ramasubramanian to get a good look at their eyes. Initially, Nova was terrified, screaming and crying through every trip to the operating room. But during the girls’ first play session, Ava talked about how fun it was to go to “the Mask Room” or “the Sleepy Room.”
“They were just the cutest little buddies,” said Nova’s dad, Kyle. “Ava has always loved going to the ‘Mask Room,’ so she was able to hype Nova up and get her excited to start going back there.”
The care team noticed the change in Nova immediately during her next visit. Now both girls sing Disney tunes while they are pushed through the halls on the way to the operating room, as the care team sings along.
Nova has had an impact on Ava, too. “Ava has always been okay going to Milwaukee to see Dr. Rama for the most part,” said Ava’s mom. “But if I tell her that Nova’s going to be there, she gets so excited. She’s so happy to have a friend there.”
After their first meeting, the families swapped contact info and stayed in touch. When Ava’s family returned to the Phoenix area to visit family, they made time for a play date with Nova. Their recent visit to Children’s Wisconsin in March was the fourth time the girls have been able to see each other in person. Their parents say they wouldn’t be surprised if the families remain lifelong friends.
“Friendship is just the best when you’re going through a hard time,” said Ava’s mom. “Just having a friend that can help you get through it is really important.”
Those kinds of peer connections can benefit the wellbeing of patients and their families, said Dr. Ramasubramanian.
“These kids are coming for anesthesia very repeatedly, and it can be quite a traumatic experience,” she said. “For the family, it’s the process of coming to the hospital, traveling, going through the anxiety of cancer in your kid, and then chemo. And while both girls are stable now, every time you come for an exam, there’s always that concern: Is the tumor coming back? But this story shows how they helped each other cope. I think that support is very important.”
When a family receives a new diagnosis, the Children’s Wisconsin team offers to connect them to other patient families if desired.
“These girls went through the process at the same time, but somebody who’s gone through the process already can be the light at the end of the tunnel saying, ‘This is temporary. You can get through this,’” said Dr. Ramasubramanian.
Meanwhile, Ava’s and Nova’s moms continue to text on a weekly basis. And now that they’re both pregnant with boys, they have even more to talk about. Ava and Nova will sometimes swap video messages to say hello, I love you, and ask each other, “Are you doing good at the Eye Clinic?”
“They’re just their own hype buddies,” said Nova’s mom.
During Nova’s visit in March, she encountered another young girl with retinoblastoma staying at the Ronald McDonald House. “Hey, do you want to play?” asked Nova. The pair played for six hours straight, and then their parents swapped contact info so they could stay in touch, too. And so another new friendship was kindled.
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