Infant Inspires Superhero Courage During Proton Treatment

For 6 months after her birth, Camaya Miller was bouncy, bright and babbling. A triplet, Camaya and her genetically identical sisters, Christina and Capri, as well as an older sister Caiya, kept their mom Carney Meade hopping.

Shortly after the girls’ 6-month checkup, Camaya stopped laughing, stopped jabbering and no longer made eye contact with her mom. Then her head started to swell, and her eyes became crossed. Doctors at Children’s Mercy in Kansas City, Missouri, soon discovered a golf ball-sized tumor growing inside her brain.

Since her diagnosis, much of Camaya’s life has been spent at Children’s Mercy, where she has had multiple surgeries to remove her aggressive brain tumor, 5 rounds of chemotherapy and 3 blood and marrow transplants. She also received 5½ weeks of proton therapy at The University of Kansas Cancer Center, under the care of Ronny Rotondo, MD, medical director of proton therapy at the cancer center.

“I would have loved to never experience this but seeing so many people love and care for my daughter, it makes you feel good as a parent,” says Carney, Camaya’s mom, who lives in Olathe. “I think I’m as much meant to be her mom as she is to be my baby. We’re going to get through this, and it is going to be a thing of the past when she’s all done. She’s like a little superhero to us.”

Rare and aggressive brain tumor

Camaya had a fast-growing, malignant and rare central nervous system tumor, known as an atypical teratoid rhabdoid tumor or ATRT, that typically arises in children under age 3. About 50% to 60% of these tumors occur in the back of the brain, which is where Camaya’s tumor was located.

Even though Camaya received aggressive treatment with surgery, chemotherapy and blood and marrow transplants, Dr. Rotondo says there are always lingering tumor cells which may remain and increase the chance of the tumor coming back.

“Radiation plays an important role in trying to eradicate the remaining tumor cells and to prevent the tumor from coming back,” says Dr. Rotondo. “Proton therapy plays a critical role in this case because Camaya is incredibly young and particularly sensitive to the effects of radiation. With proton therapy, we can maximize the chance of controlling the tumor, minimize the chances of acute and late toxicity and try to achieve the best quality of life long-term.”

Because Camaya was an infant, she was sedated and slept during her proton treatment. She also wore a customized mobilization device, or head mask, along with a customized head and neck rest, to ensure the proton treatment was delivered with millimeter precision.

Personalized proton therapy care

Proton therapy is especially beneficial for pediatric cancers like Camaya’s because it targets tumors by using a pencil-thin beam of protons to deliver radiation directly to the tumor. Proton therapy also conforms to the shape of the tumor, allowing for more effective treatment and preventing unnecessary radiation to surrounding organs and tissues.

For pediatric patients like Camaya, proton therapy nurse navigator Sara Grigery, RN, creates colorful, custom decorated masks that children wear during proton treatment. The mask covers Camaya’s face and secures her to the table to keep her tiny body still during treatment.

“I talked with Carney about something special we could do for Camaya, and she said each of her girls has a special shade of purple,” says Sara. “We put the girls’ initials on Camaya’s mask to make sure on the days that her sisters can’t be with her to hold her hand that they are still with her … their initials and their colors are just a reminder of how loved Camaya is.”

Sara, who has been an oncology nurse for 20 years, says while she can’t change a child’s cancer diagnosis, she can personalize their care.

“I can find something bright in this journey for them to look forward to,” says Sara about the masks she creates. “Sometimes it motivates the children… to come daily and go through their proton treatment.”

Benefits of proton therapy in children

Proton therapy is a form of external beam radiation that uses energized protons to deliver radiation to a tumor. Proton therapy is more precisely targeted and focused, concentrating radiation in the tumor, where it will benefit the patient, and minimizing radiation to the surrounding healthy tissue.

“I think what’s important about proton therapy is that the beam that comes out of the proton machine is able to stop at a particular depth,” says Ronald Chen, MD, MPH, chair of radiation oncology at the University of Kansas Medical Center. “So, when we are using it to treat a cancer patient, that beam can actually stop at the tumor and not go beyond it.”

Dr. Chen says this is particularly important when treating small children and infants, like Camaya.

“Proton therapy absolutely is the best treatment for a small child with a brain tumor when radiation is necessary to completely eradicate the tumor and cure the patient,” says Dr. Chen. “With proton therapy, we can minimize the radiation dose to other parts of the brain, which is so important for a child who is growing. If we treat other parts of the brain unnecessarily with radiation, the patient might develop growth defects or long-term side effects.”

Going above and beyond

Carney says she is incredibly thankful for the team of proton experts who cared for Camaya. And while Camaya has completed her proton treatments, she continues to be monitored by her physicians, including Dr. Rotondo.

Dr. Rotondo says Camaya is doing well. Her most recent MRI, which she had in late 2025, indicated no disease recurrence. She currently receives physical and occupational therapy and works with a speech and language pathologist.

“A lot of people have been inspired by Camaya, and seeing all the love and care she’s received makes you feel really good as a parent,” says Carney. “I knew she was in good hands.”