Kids get UI tumor care

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On the third Friday of every month, young patients who have had or are currently battling brain tumors can come take part in a clinic at the University of Iowa Children’s Hospital that is like no other in the state.

Traditionally, the side effects of brain tumors could require a child to need a variety of different consulting sessions with neurologists, endocrinologists, psychologists, and more. But with the Pediatric Brain Tumor Clinic, the burden of scheduling multiple appointments is eliminated and most families only have to travel to the hospital once every few months.

On clinic days an array of pediatric doctors specializing in different areas who normally wouldn’t get to collaborate so closely, gather together to help the child with whatever is medically recommended.

The clinic allows them to meet in one room and have a roundtable discussion to strategize the best plan for helping the patient recover.

The clinic started in February 2015 by Mariko Sato, a clinical professor of pediatrics at UI Hospitals and the only trained neuro-oncologist in Iowa.

“Patients can just come here once and have four different visits,” Sato said. “It’s special because we [doctors] already committed to be here.”

Sato said she has overseen about 70 patients in the first year of the clinic. Many of the children she works with have gone through surgery and no longer have brain tumors but still require comprehensive care.

Slow growth development, mental-health disorders, and muscle weakness are just some of the complications that can arise from tumors or their treatment.

“Even though we cure the cancer, that’s not the end of it,” she said.

Brain tumors are the second most common cancer in children, and Sato said about 70 percent of children survive the disease. For her, it’s an exciting field because it is moving rapidly as genetic causes are increasingly found and less radiation on the brain is required.

“In more recent years they’ve moved towards more focused treatment to protect cognitive function,” she said.

For Sato, her job isn’t only about helping the kids.

“We treat children but we’re working with families,” she said. “The patient’s family gives us the energy to keep going.”

One of her patients is 8-year-old Caleb Shannon from Mason City, Iowa. In 2011, Caleb’s mother Jackie saw that her son was getting headaches and having trouble walking. When they went to the hospital, doctors discovered that a stage-2 tumor bigger than a baseball needed to be prevented from attaching to Caleb’s brainstem.

Since then, the tumor has been removed, but he’s had to visit the hospital every three months for the past four years. More recently, Caleb’s only had to come in every six months.

Jackie said she loves how the schedule is coordinated on clinic days.

“They do everything to make it easy. We get to see everybody in a day,” she said.

Caleb, who loves sports, was grinning and tossing around an inflatable beach ball in one of the examination rooms.

“He’s my absolute pride and joy,” Jackie said, glancing over at her son as he played.

Caleb said he wants to be a scientist to “cure cancer and migraines.”

For Amanda Grafft, another specialist on the clinic team, the energy of kids like Caleb means there’s always something entertaining going on at the children’s hospital.

“They’re still doing arts and crafts and shooting Nerf darts down the hallway,” she said.

A clinical psychologist who performs neuro-psych tests on the brain tumor patients, Grafft screens for brain behavior issues and makes sure the children’s memory, language, and decision-making skills are functioning properly.

She also studies the mental health of patients to ensure they aren’t at risk of depression. Graft said she enjoys following the children from diagnosis to treatment to recovery.

“It’s amazing to be around these kids,” she said. “I still get goose bumps when families tell me about support from community and friends.”

Liuska Pesce a pediatric endocrinologist with the clinic, also loves seeing patients develop from the time they are babies to the time they are in college.

However, she specifically helps kids by giving them the hormones they need to grow. She said a tumor near the hypothalamus or pituitary gland can cause endocrine problems for a child that can effect their entire body.

“It’s very rewarding because I can offer special treatment and see the patient as a whole,” she said.

Pesce can replace sex hormones as needed so the patients can experience puberty alongside the rest of their friends.

“It helps them to grow tall and get as close as possible to their genetic potential,” she said.

For Pesce, it can be hard to keep emotions in check when patients are found to have new tumors.

“You always wonder why a child gets cancer,” she said.

Pesce says the specialists work together to find this out on stressful but rewarding clinic days.

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