Thanks to investments in faculty and staff and to implementing best practices, GCH’s pediatric cancer program is gaining a national reputation. The Brain Tumor Program is leading the way in these advances.
In the field of pediatric cancer, there are few challenges greater than treating children with brain tumors.
Brain tumors are the most common tumors in children under 14 and the most common solid-state tumors experienced by all kids. Yet the path to recovery is uncertain: Survival rates are generally lower than for other forms of pediatric cancer; every level of treatment carries heightened risks. Radiation can negatively affect how the brain can think and process, and chemotherapy can cause damage to organs. Some tumors can’t be surgically removed without risking neurological damage, necessitating consistent long-term monitoring to ensure that signs of relapse are identified.
“In our best-coordinated efforts to help kids, we want to both minimize hurting them and ensure they can live long, fulfilling lives,” said David Korones, MD, director of the Brain Tumor Program at GCH as well as the founder and director of the Pediatric Palliative Care Program.
It’s a delicate balance, one that the GCH Brain Tumor Program has excelled at. As Korones and his team continue to produce positive outcomes, drive innovative treatments, and collaborate across divisions to identify rare disorders, referrals to the GCH Brain Tumor Program have increased significantly.
“We’ve gone from seeing 20 to 25 kids a year to more than 40. For a modestly sized operation like ours, that’s a lot,” said Korones.
These referrals are coming from all over, not only the Finger Lakes region and across New York State, but as far as Singapore and India. In addition, the program is participating in several clinical trials that are attracting patients to GCH from throughout the US and Canada.
A Growing Reputation
The growth of the Brain Tumor Program reflects the overall rise of the pediatric Hematology/Oncology division at GCH. In 2023, it was ranked for the first time by U.S. News & World Report among the top 50 children’s hospital programs for pediatric cancer, a reflection of improved capacity for complex treatments and top-notch patient outcomes.
Jeffrey Andolina, MD, interim chief of the Division of Hematology/Oncology, says that the investment in personnel and a commitment to following best practices have enabled GCH to compete effectively with the country’s best children’s hospitals, many of which operate in larger metro areas. “Our group has had significant growth and expansion—including the hiring of faculty, attending physicians, and nurse practitioners—which has played a big part in our success,” he said.
The expansion of the division has also enabled faculty to focus exclusively on their specialties, such as Korones and brain tumors, Andolina and bone marrow transplants, and Suzie Norohna, MD, and sickle cell disease. These investments have paid dividends in multiple ways: each respective area is producing great patient outcomes, and individual clinicians are gaining notoriety beyond the immediate region for their level of care.
“We are known now for having a really kind and thoughtful group of physicians and nurses. Not only are we getting more patients, we are also getting calls from physicians and nurses from other health systems who want to join us,” said Andolina.
The division will get an additional boost and new leadership this fall when Jamie Flerlage, MD, comes to Rochester from St. Jude Children’s Research Hospital, a world-renowned pediatric
cancer hospital. She will become GCH’s new division chief and academic director for Pediatric Hematology/Oncology, bringing a wealth of experience. Flerlage’s specialty is Hodgkin’s lymphoma, and she is internationally well-respected as a leader of a large group of physician-scientists who design cutting-edge studies with novel treatment approaches. In addition to being division chief at GCH, she will serve as an assistant director of Clinical Research within Wilmot’s Clinical Trials Office (CTO), helping URMC provide high-quality care to both adult and pediatric cancer patients. (profile on page 10).
In addition to investments in personnel, Korones credits the growth of collaboration and teamwork among subspecialties in GCH in helping to develop the Brain Tumor Program.
“We have built a very collegial network incorporating multiple areas of expertise across the spectrum of medical care, including radiation oncologists, pediatric neurosurgeons, pediatric radiologists, and pediatric neurologists,” said Korones. “I cannot emphasize enough the many challenges these kids and their families face and how important it is that we work together.”
Collaboration is a major part of effective cancer management, and the Brain Tumor Program not only utilizes teamwork for treatment plans, but also for getting families the help they need to get through an extremely difficult time.
“Kids and their parents are some of the most amazing patients I take care of; they are so brave and positive and do what needs to be done,” said Robert Thompson Stone, MD, pediatric neurologist. “They keep working hard to have a good quality of life.”
Thompson Stone and the neurology team play a significant role during every step of the process for brain tumor patients at GCH. They are frequently involved in the initial diagnosis, referring patients for examination if they display persistent symptoms indicating problems with brain function or increased pressure in the brain, which can lead to progressively worsening headaches associated with vomiting.
Once patients are diagnosed, Thompson Stone helps provide supportive care for neurological symptoms while the Hematology/Oncology team handles the tumor treatments.
“I try to support the kids particularly with regards to their needs with school. Many patients have to come out of school initially, and I help them with the process of integrating them back into school and advocating for different services and special personnel.”
In addition, the neurology team helps monitor both mental and physical symptoms during the process of treatment, including trying to reduce any neuro-cognitive impairment that may result from radiation treatments, as well as any disorders that may emerge subsequent to the diagnosis.
When a child goes into remission, the neurology team continues to follow them long term in case symptoms return, particularly kids whose tumors can’t be physically removed—only shrunken through treatments.
“Some kids have tumors that can be treated or in a localization that can be removed surgically and can end up with essentially normal neurologic function. Other times, the kids might have chronic tumor— slow growing but not spreading—and we need long-term follow-up to manage symptoms over time. A lot of the kids we are following are doing great, however,” said Thompson Stone.
While the neurology division provides long-term care to patients, the surgical and radiation oncology teams are critical to providing life-saving care to remove tumors and attack any remaining malignant cells in the body. Korones credits Howard Silberstein, MD, professor of Neurosurgery, for successfully leading the surgical procedures for brain tumor patients for more than two decades. Louis Constine, MD, vice chair of the Department of Radiation Oncology, has led GCH radiation treatments for more than 40 years and has become a world-renowned expert on the subject who has co-authored and edited several book chapters and books.
“Part of what has driven our outcomes is having skilled clinicians on the level of Drs. Silberstein and Constine,” said Korones. “Given their experience, there are few cases they aren’t equipped to manage and treat effectively.”
On the Leading Edge of Treatments
In addition to embracing collaborative teamwork, the Brain Tumor Program has distinguished itself by pushing the envelope on treatments and by utilizing the URMC Genetics team to identify rare conditions. This progression is reflective of the overall growth of the Wilmot Cancer Institute’s genetics resources and expertise in treating complex cases for all patients.
“Genetics is one broad area where things have substantially improved from the past few decades,” said Korones. “Our basic understanding of what makes these tumors tick has gotten better; we can get a genetic readout of every child’s tumor and detect mutations, which will then determine their risk level and how intensive the treatment will be.”
These precision diagnoses are complemented by GCH’s participation in clinical trials for several new treatments. One of these trials is centered on the drug ONC201, which was developed to treat the otherwise lethal, inoperable tumor called Diffuse Intrinsic Pontine Glioma (DIPG). ONC201 is applied as a pill to be taken once a week after radiation treatments are done.
Thus far, Korones has seen promising results using ONC201 in some patients with DIPG after radiation therapy was completed. “It appears to be more effective in some kids than using just radiation alone,” he said.
The program is also launching a trial of the drug Day 101, which is a targeted treatment against tumors that presents fewer risks of also attacking the child’s healthy cells. Craig Winter, a 2016 GCH Miracle Kid, has gotten great results from using Day 101 to treat his tumor.
“Having Children’s Oncology Group trials is a great thing, because you have something unique to offer when other places don’t; these are tough diseases, but it’s incredibly gratifying to go the extra mile with these families,” said Korones.
In the end, not only do these treatments help save lives, but they also make the experience easier on the family.
“Recently we had a six-year-old, Finn Schillaci, who had an inoperable brain tumor. Five years ago, we would have given him over a year of chemo; now we give him two capsules of a drug called selumetinib twice a day,” said Korones. “Finn has a full head
of hair, no side effects, and the tumor has shrunk well over 50 percent.” (Read more about Finn’s story on page 8)
Again, teamwork—and communication with other medical centers—is critical for determining when to utilize new treatments. There are many steps along the approval process for a treatment, from clinical trials to FDA approval to widespread adaptation, and there are few “aha!” moments that provide 100 percent certainty that a new drug or regimen is effective and safe. In this case, it’s up to program team members to balance the knowledge and research available and weigh it against the needs of the patient.
“Whenever we go forward with a new treatment, we meet as a team to make sure everyone is on board, and then we talk to colleagues in other hospitals to get their perspective as well,” said Korones.
It is this willingness to push forward with innovative ideas, and getting support from across the division, that has helped lead to quality outcomes, more referrals, and a growing national reputation.
“Dr. Korones has really established himself as a wonderful clinician, and we appreciate his dedication and care,” said Andolina. “Families talk, and that has an influence on who is referred to us in the end.”