Kids with Cancer, Now Survivors: Proton Therapy and Research Benefits Pediatric Cancer Patients

When Harry Silberberg, 22, graduates from Florida International University at the end of the school year, he’ll celebrate a milestone he wasn’t sure he’d reach. In 2017, at the age of 15, he was diagnosed with germinoma, a relatively rare brain tumor.

Harry became the first pediatric patient at Baptist Health Miami Cancer Institute to undergo proton therapy, a breakthrough, precise radiation treatment that spares nearby healthy organs and tissues ― particularly important in a still-developing child. Today, Miami Cancer Institute has the largest pediatric radiation oncology program in Florida.

“Proton therapy has huge benefits, especially for children whose tumors are located very close to important structures,” says Matthew Hall, M.D., lead pediatric radiation oncologist at the Institute.  “It is the most significant radiation technology recently developed.”

September is Childhood Cancer Awareness Month. Cancer is the second leading cause of death in children 14 and under, according to the American Cancer Society. About 16,000 children and adolescents are diagnosed with cancer each year. And while advances in treatment have significantly improved survival rates for most childhood cancers, it is the use of sophisticated technology like proton therapy that is offering additional benefits such as improved quality of life and a reduction in the risk for secondary cancers later in life.

“I remember it was explained to me that proton is more like sharp-shooting, accurately hitting the target,” recalls Harry, who says most of his acquaintances today have no idea he is a brain tumor survivor.

He also knows first-hand the difference in side-effects between conventional photon radiation and proton, since he needed a combination of the two. “After photon therapy, I would be very sick. I would throw up. But with the proton, it wasn’t as bad,” he says.

Harry, a Palmetto Bay resident, is now part of a pediatric research study led by Dr. Hall to look at the biological differences of patients and their tumors to determine a tumor’s receptiveness to radiation. Dr. Hall hopes to enroll 200 children and young adults in Florida who were treated recently for some of the most common childhood cancers with the intent to cure.

The study, funded through the Florida Department of Health by the Live Like Bella Pediatric Cancer Research Initiative, involves testing tissue that was removed during surgery or biopsy, so that participants do not need to undergo additional procedures.

“Research in adults has shown that radiosensitivity is a better predictor of patient response to radiation therapy than other indicators such as radiation dosage,” Dr. Hall says. “But this research has never been done using children. If we are treating a child with a brain tumor, for example, and we are able to adjust our radiation dose lower because we know it is a tumor that is very receptive to radiation, we can minimize our risk for harming the patient without compromising a cure.”

Some of the common side effects of radiation therapy are fatigue, nausea, hair loss and skin problems. Toxicities can cause organ damage and long-term side effects can include cognitive problems and growth changes, as well as the higher chance of a second cancer later in life.

Senaya Estorcien, a 10-year-old fourth grader when she had surgery in 2020 to remove a medulloblastoma brain tumor, is also taking part in Dr. Hall’s study. Following surgery near her home in Pompano Beach, Senaya came to Miami Cancer Institute daily for nearly three months to undergo proton therapy.

“Proton just wasn’t available in Broward County,” said Daphney Estorcien, Senaya’s mother. Working and raising five children, Ms. Estorcien struck a deal with her husband. “We knew proton therapy was what was best for her. I handled the kids and the appointments up in Ft. Lauderdale, and my husband would leave work early every day to take her to Miami. Through all that, Senaya didn’t miss a day of school.”

Now Senaya is a happy sixth grader and her parents are relieved that, although they had to drive to Miami, the best care was available.

Another family unfortunately accustomed to the drive to Miami are Kim and Chris Siska, parents of Lacey, who had brain surgery to remove an ependymoma at Nicklaus Children’s Hospital the day before her 14^th birthday in 2020. Lacey, from Lake Worth Beach, was airlifted to the hospital after the mass was detected at Baptist Health Bethesda Hospital East. Following her recovery from surgery, the family drove to Miami nearly every day, Monday through Friday, for 33 rounds of proton therapy at Miami Cancer Institute.

“There aren’t a lot of proton centers,” her mom, Kim, said. “We understood this targeted therapy would help avoid any additional potential damage to her brain and give her the best chance of not having recurrence.”

Today, 16-year-old Lacey is back swimming competitively for her high school team and was named its captain. She also received her driver’s license.

When presented with the opportunity to become part of Dr. Hall’s study, the family didn’t hesitate. “Awareness is everything,” Kim Siska says. “I use social media to educate people on the symptoms to watch for and to gain an understanding of the various brain cancer types and to highlight the problem we have with very little funding being directed for this disease.” This month, they are meeting with U.S. government leaders in Washington, D.C., to push for an increase in federal funding for childhood cancer research.

Along their cancer journey, Harry, Senaya and Lacey faced numerous challenges, but did so with a courage and positive attitude well beyond their years, Dr. Hall says. They remain disease-free and continue with regular scans and blood work to monitor their health.

“At Miami Cancer Institute, we have a very strong research focus and understanding an individual’s genome is increasingly important as we seek to personalize care for every patient,” he says. “Patients like Harry, Senaya and Lacey and their parents know it’s about providing a high chance of a cure while minimizing long-term effects. This is exciting research that has never been done with children before.”