Pediatric Patient Stories

Pediatric Brain and Spine Care patient stories
Zinnia Wagner, who was treated for a brain tumor at age 4, gets an exam with Dr. Kellie Nazemi, a Doernbecher pediatric neuro-oncologist (a specialist in children's brain and spinal cord tumors).

Learn about some of the young patients who’ve been treated at OHSU Doernbecher for a brain tumor.

"A world-class surgeon who treated our daughter with love and compassion"

Zinnia Wagner, was just 4 when she began having headaches and vomiting. Her mom, Julia Thompson, tells about her daughter’s care at Doernbecher for a medulloblastoma, one of the most common brain tumors in children.

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My mom, a nurse who has worked with neurology patients, encouraged us to get an MRI. We got one quickly at OHSU, and then got the call no parent ever wants. We were on the way to dance class, but we changed course and drove up to Doernbecher for the first time.

The next morning, Zinnia had a six-hour surgery with Doernbecher’s pediatric brain tumor neurosurgeon, Dr. Lissa Baird. We are big fans of Dr. Baird — she’s so careful and thorough. She was able to confirm removal of the entire tumor, which had just started to wrap around Zinnia’s spinal cord. Dr. Baird also discussed the nature of the tumor and sent tissue for molecular DNA testing to learn more about the level of risk.

As a parent, you feel plunged into the deepest, darkest well when you hear, “Your child has a brain tumor.” But Dr. Baird brightened our stay with a touch of compassion. Before surgery, she carefully French-braided Zinnia’s hair and tied it with little pink ribbons. After surgery, when we couldn’t wash Zinnia’s hair and she was vomiting, that meant everything. We had a world-class surgeon who treated our daughter with love and compassion.

We spent about 10 days at Doernbecher after surgery. That was intense. Zinnia’s right hand didn’t work, her eyes swiveled to the right, and she couldn’t walk or suck her thumb. The Doernbecher physical therapists gently pushed her to walk again, and Child Life spent time finding activities to distract Zinnia from her discomfort.

Zinnia had 30 sessions of sedated brain and spine radiation, followed by a year of chemotherapy. Our neuro-oncology team — Dr. Kellie Nazemi, nurse practitioner Chris Conrady, nurses Ann Houck and Lily Doebler, and Hannah Ono from Child Life — felt like family, and the ward felt like home. Every nurse’s face was familiar, and they loved and cared for Zinnia with such passion.

During treatment, I came to appreciate Dr. Nazemi’s role in the Pediatric Neuro-Oncology Consortium, a national clinical trial organization. She knows about every treatment available, so I never felt geography limited our options. I knew she was talking with experts at the Dana-Farber Cancer Institute and other places, so her recommendations reflected their work as well.

Dr. Nazemi also said, “If you Google your daughter’s condition, here’s what you’ll find.” She walked us through everything out there and pre-emptively discussed it — here’s what we know, here’s where I stand, and here’s what we recommend based on your circumstances.” Treatment was always tailored to Zinnia’s needs and our concerns.

We had spoken with another physician about a new trial for sodium thiosulfate as a hearing protectant for children receiving brain tumor treatment. Dr. Nazemi was thrilled to partner with us and that physician to try it, and we did see protective effects. Knowing how brain tumor treatment can affect kids, especially a child like Zinnia who loves to read, do crafts and stay inside, it meant so much to me that we worked to protect her senses and abilities.

Zinnia is now 6, cancer-free and in school. She is transitioning out of active treatment as her family joins efforts to raise money for Doernbecher’s Pediatric Brain Tumor Program and for the Pacific Neuro-Oncology Consortium. Julia Thompson says she wants every child to get the same outstanding care that Zinnia received.

"That's my daughter"

Sophia Malinoski and family

Sehra Sampson got some of the most frightening news of her life from an unwitting colleague.

Sampson, an emergency room doctor at OHSU Doernbecher, took a call from a neuroradiologist. He had spotted an anomaly on a brain scan of a young patient from the night before.

That patient, Sampson instantly realized, was her own 8-year-old daughter, Sophia Malinoski.

“My stomach dropped,” Sampson says. “I told him, ‘That’s my daughter.’ ”

Sampson’s husband had taken Sophia to Doernbecher Children’s Hospital after she fell and hit her head at soccer practice. A “quick brain” MRI scan seemed to show no more than a concussion, and Sophia was sent home.

Now another look revealed what could be a brain tumor. Scans using Doernbecher’s child-dedicated iMRI suite would soon confirm it.

Doernbecher’s top-of-the-line technology and the skill of pediatric neurosurgeon Lissa Baird, M.D., would prove pivotal in the days to come. But Sampson and her husband — Darren Malinowski, an OHSU critical care/trauma surgeon — didn’t know that yet. The two doctors could take their daughter anywhere, and they wanted the best.

“While all of this is happening, Darren and I are asking ourselves, ‘Is Doernbecher the right place to have the surgery?’ We wanted to explore all of the options nationwide,” Sampson says. “We started calling our colleagues across the country. We discovered that we were incredibly lucky — Doernbecher had the only iMRI on the West Coast, and Dr. Baird was considered one of the best pediatric neurosurgeons anywhere.”

Sophia had surgery days before her ninth birthday. Read more about her care at Doernbecher and how she and her parents now consider her concussion lucky.

"A place that cared"

Sarah Wood, 17, was at a high school rehearsal for “Grease” when her parents got the news: An MRI scan showed a large brain tumor. They needed to bring her to Doernbecher Children’s Hospital, a five-hour drive from their home in Southern Oregon, right then. The months that followed, with a scary diagnosis and frequent trips back and forth, weren’t easy. But Doernbecher made it better, Sarah’s dad says. "We felt like we were in great hands from the very beginning,” Eric Wood says. “It just seemed like we were coming to a place that cared. And that was wonderful.”

Thriving after a brain tumor

At age 5, Liam Jaussi started losing his appetite and waking in the middle of the night. Then one day his dad, Paul Jaussi, noticed that one side of Liam’s face was drooping.

“Here’s where we go off a cliff,” says his mom, Laura Jaussi. A CT scan showed that Liam had a large brain tumor. He underwent surgeries and radiation therapy at Doernbecher Children’s Hospital.

Liam, now a middle-schooler, has thrived since then. His MRI  scans are clear, and he enjoys sports, and playing piano and trombone. He also  helped start a “$6 Club” that has raised more than $90,000 for Doernbecher’s  neurosurgery program. Read more about Liam’s progress and how the generosity he inspired continues to reap benefits for others.

Cameron and Justin

Cameron and Justin

Cameron is a kid, and Justin is an adult. But despite their age difference, they forged a bond at Doernbecher because they were both being treated for the same kind of brain tumor, medulloblastoma. Justin, the rare adult with this type of tumor, received care at Doernbecher because his doctors knew pediatric specialists would have more expertise. “It’s been a really good thing for both of them,” says Chris Conrady, a pediatric nurse practitioner at Doernbecher Children’s Hospital.

"We'll take care of her"

The Shoemaker family came to Doernbecher from Alaska so their daughter, Linzi, could have a stem-cell transplant as part of treatment for a brain tumor. 

“The staff was wonderful. Everybody was caring, very professional, very good at what they did,” according to her dad. “We really had this feeling of ‘We know what we’re doing. We do this, and we know what’s best for your family, for your daughter, and we’ll take care of her.’”  

Katie Knudson of Milwaukie, meanwhile, benefited from OHSU’s world-class expertise in precision medicine. She controls her leukemia with Gleevec, a pill developed through the work of OHSU’s Dr. Brian Druker.  

“I never had to deal with hair loss or the horrible nausea or any of the side effects that come with regular cancer treatment, chemo and radiation, because I had Gleevec,” she says. “I kept going to school. I kept doing everything that I wanted to.” 

"He's full of life"

Having a brain tumor and losing most of his vision hasn’t slowed down Ryker. He was 5 when Doernbecher neurosurgeons removed his tumor. Since then, he has learned to ride a bike by following his mom’s voice. “He’s full of life,” says his mom, Jacqueline. She spots him swinging his cane like a light saber. “FULL of life.” Read more about Ryker and his service dog, Bella.

A patient gives back

Whitney McClain

Whitney McClain is an adult now, but she’s still grateful for the treatment she received for a brain tumor years ago at Doernbecher. She and her mom, Pam McClain, returned over the 2015 holidays to give something back: gifts for patients, plus a $10,000 donation toward OHSU’s new five-story guest house for patients and families.

“I’m so thankful for how great I was treated here,” says Whitney, who’s pursuing a singing career. “If I can help another kid and give some hope to hold onto — it makes me tear up.” Learn more about Whitney McClain and her extraordinary generosity.

Saving Isaiah

Isaiah Neumayer Grubb of West Linn was diagnosed with a brain lesion at age 7. His mom, Melissa Neumayer, remembers Doernbecher’s pediatric neurosurgeons preparing for surgery. One asked Isaiah if he had any questions. He did: “Am I gonna die?” 

“This wonderful, wonderful woman pulls her chair right over to Isaiah and gets on his level and looks at him right in the eye and says, ‘You know what, buddy, there are so many things in this world that you can die from. I don’t believe this is going to be yours.’ And Isaiah said, ‘OK, thank you.’ And that was it.”  

They’re also grateful to the lead pediatric neurosurgeon, Dr. Nathan Selden. “Dr. Selden, he …” Neumayer starts. “… Saved his life,” her husband finishes. “Saved his life,” Neumayer repeats. “He saved our world.”

Read more about Isaiah and his family.

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