Collaboration among specialists—and convenience for families—guides Pediatric Brain Tumor Clinic approach
By David Pedersen
One evening in 2007, when Brady Jorgensen was 9 months old, his mother, Brandy, noticed his left eye twitching.
Less than two weeks later, Brady was diagnosed with a malignant brain tumor.
Neurosurgeons in Omaha removed 70 percent of the butterfly-shaped mass, but within 10 weeks post-surgery, 60 percent had grown back. At 10 months old, Brady began an 18-month chemotherapy regimen.
“They did brain MRIs on Brady every three months, and for a while everything seemed stable,” Brandy says.
In June 2010, Brady’s tumor started growing, which led to 13 months of chemotherapy. In July 2013, tumor regrowth returned again, bringing more uncertainty to Brady’s family.
By October 2014, when scans showed that Brady’s tumor had not diminished, Brandy decided to seek a second opinion. She contacted pediatric cancer specialists at University of Iowa Children’s Hospital, who were in the process of launching a Pediatric Brain Tumor Clinic for patients and families.
‘Don’t let it get in your way’
Brady’s tumor is categorized as a Pilomyxoid astrocytoma, which forms from cells in the brain called astrocytes. This rare type of tumor—in Brady’s case, about the size of a golf ball—occurs often in the hypothalamus, the area of the brain responsible for the body’s key hormones.
Pilomyxoid astrocytomas also can affect the brain’s optic nerves. For Brady, this caused the initial eye twitching, which has since led to total vision loss in his left eye and some vision loss in his right eye.
With his rosy cheeks and tousled hair, Brady is a poster boy for “cute kid.” His mannerisms are lively and his face is expressive, whether he’s listening intently or making quips in response to a question or situation in the exam room.
Brady is not shy around adults, which Brandy attributes to all the time he’s spent with doctors and nurses. But Brady appears and acts like other kids, too, full of curiosity and mischief and having as much fun as possible.
“Brady has a big personality, and he spends more time caring about other people than he does himself,” says his maternal grandmother, Teresa Valyer. “He doesn’t talk about his own cancer, it’s just something that’s out there. But he does know cancer makes him special.”
What would Brady tell other children who have been diagnosed with a brain tumor?
“It’s going to be OK, and I have one, too,” he says. “Don’t be scared and just feel confident in yourself, and don’t back down. Don’t let it get in your way … I just thought of that right out of my head!”
Multidisciplinary care for patients, convenience for families
The Pediatric Brain Tumor Clinic at UI Children’s Hospital—the first clinic of its kind in Iowa—is multidisciplinary and collaborative.
Young patients with brain tumors need both treatment for their tumors and management of problems related to injuries to their still-developing brains. Bringing pediatric specialists from multiple disciplines into one clinic helps facilitate communication among providers, streamline care, and deliver a unified message to the patient and family, notes UI Children’s Hospital neuro-oncologist Mariko Sato, MD, PhD.
“Our clinic is designed for patients who need the collaboration of many different providers,” Sato says. “All members of the team—from neurosurgery, neuro-oncology, radiation oncology, endocrinology, ophthalmology, neurology, and psychology, as well as social work, child life, and nursing— work together to care for patients and their families.”
A multidisciplinary approach itself is not new, notes John Buatti, MD, UI professor and departmental executive officer of radiation oncology.
“Here at Iowa and other academic medical centers, interdisciplinary care management among various medical specialties has been in place for years,” Buatti says. “What makes our Pediatric Brain Tumor Clinic unique is the formalized way we interact in a framework that not only fosters collaboration but also benefits patients and families in important ways.”
For families, the benefit is clear: Patients typically are seen by multiple specialists in one day at one location, eliminating the need for scheduling several appointments with different specialists over multiple days. In a rural state like Iowa, where families may travel hours to Iowa City for a clinic appointment, it’s a major convenience.
“It’s awesome for families,” says Meredith Wisniewski, nurse clinician and care coordinator for the Pediatric Brain Tumor Clinic. “They arrive at the hospital, the child gets his or her imaging done, and then they come to the clinic and see all the specialists they need to see in one spot. Ophthalmology requires special equipment, so patients go to that clinic, but generally we’re able to schedule those visits for the same day.”
From a specialist’s perspective, “I can interact with the oncologist or neurologist, for example, and see what’s happening across the patient’s entire spectrum of care,” says UI Children’s Hospital pediatric neurosurgeon Brian Dlouhy, MD (’13 R, ’14 F). “I’m allowed to evaluate the imaging to determine next steps and discuss it right there with the family and the rest of the team. We don’t have to wait until the next day or the following week. The patient and family get immediate feedback.”
UI Children’s Hospital pediatric ophthalmologist Arlene Drack, MD (’92 F), agrees.
“Everyone knows what’s going on with the patient,” she says. “It’s not like a week after I see the patient I find out there’s a change in the brain tumor. I know that day, and I can respond back to the radiation oncologist or the neurosurgeon what I’m seeing from my clinical perspective so they can tailor their care based on that.”
‘They had a plan’
When Brady and his family arrived at UI Children’s Hospital in January 2015, the Pediatric Brain Tumor Clinic was ready. The team had received Brady’s medical records, scans, and pathology reports from Omaha in advance and already had devised a course of treatment to share with the family.
In Omaha, Brady had received chemotherapy to keep the tumor stabilized. Given its proximity to the optic nerve and surrounding areas of the brain, surgery posed several risks, including the likelihood of permanent blindness.
After weighing all considerations, the pediatric brain tumor team proposed fractionated stereotactic radiotherapy, which involves narrow beams of radiation administered from multiple angles to precisely target the tumor while sparing surrounding tissue. Using an advanced technology called infrared optic guidance, specialists can accurately pinpoint the radiation delivered to within tenths of a millimeter. A patient receives the radiation in small, incremental doses over time to further minimize the risk to noncancerous areas.
“We developed a very detailed stereotactic plan to really concentrate on the tumor itself,” Buatti says. “We use combinations of very high-resolution MR scans as well as CT scans for the dose calculation in order to minimize side effects.”
For Brandy, the family’s very first appointment at the Pediatric Brain Tumor Clinic still resonates.
“They said, ‘Here’s what we can do.’ They did their homework before we came, and they had a plan. That was comforting,” Brandy says.
In February 2015, Brady began a six-week course of radiotherapy— 28 treatments, Monday through Friday. He and his family stayed at the Ronald McDonald House in Iowa City. To keep up on his schoolwork, Brady worked every day with Megan Soliday, a pediatric teacher with educational services at UI Children’s Hospital who coordinated Brady’s lessons with his elementary school back in Council Bluffs.
Overall, Brady’s radiotherapy sessions went smoothly, and for now the family remains cautiously optimistic. They understand this is not a cure, and the UI Children’s Hospital team will continue to follow Brady’s progress. At a follow-up clinic appointment last fall, the tumor appeared to be well controlled.
“Brady knows this radiation is going to give him a chance,’” his grandmother Teresa says. “And now he talks about going to college. I’m not sure we had that conversation too much before.”
For Brady, his experience at UI Children’s Hospital has meant one thing in particular.
“Just hope,” he says. “That’s all I do is hope.”