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Riley L.: No Stone Unturned

When Riley’s parents enrolled her in a clinical trial for recurrent medulloblastoma, a fast-growing, high-grade tumor located in the cerebellum, her response to treatment was dramatic. The trial is available only at Children’s Memorial Hermann Hospital in Houston.

RileyFifteen-year-old Riley is no stranger to hospitals. Diagnosed with malignant medulloblastoma in 2008, she underwent two open brain surgeries to remove the tumor and later, two non-invasive radiosurgical CyberKnife® procedures. When the tumor recurred in 2013, she was given high-dose chemotherapy and received a stem cell transplant to help her body bounce back after the infusions.

“After the chemo, we went until April or May of 2015 before they found another small spot and opted to try the CyberKnife for the second time,” says Riley’s mother Melissa. “At her three-month follow-up MRI, we learned that the procedure didn’t help.”

Somewhere along the way, Melissa joined a Facebook group called Parents of Kids with Medulloblastoma, a forum for parents who want to share their knowledge and experience. “I had heard about a clinical trial of direct infusion of chemotherapy into the fourth ventricle around the time Riley had the stem cell transplant in 2013,” she says. “After her oncologist told us her body wouldn’t tolerate any more systemic chemo, I started looking for other options. I was fortunate to find another parent on the Facebook page whose child had just finished the clinical trial in Houston.”

Investigating Alternatives

Through Parents of Kids with Medulloblastoma, Melissa connected with Marcia Kerr, RN, CCRC, research coordinator for pediatric neuroscience at the John P. and Kathrine G. McGovern Medical School at UTHealth. Among the trials Kerr coordinated was one led by David I. Sandberg, M.D., FAANS, FACS, FAAP, director of pediatric neurosurgery at Children’s Memorial Hermann Hospital, the Memorial Hermann Mischer Neuroscience Institute at the Texas Medical Center, and the McGovern Medical School.

Prior to his arrival in Houston in 2012, Dr. Sandberg conducted translational studies that demonstrated the safety of infusing chemotherapeutic agents directly into the fourth ventricle to treat children with recurrent malignant brain tumors in this location. The promising results of those studies led to a pilot clinical trial completed in August 2015, and a new methotrexate dose-escalation study available only at Children’s Memorial Hermann Hospital in collaboration with the Mischer Neuroscience Institute.

“This radically new approach to chemotherapy delivers agents directly to the site of disease, which minimizes the side effects for children like Riley by decreasing systemic drug exposure,” says Dr. Sandberg, a professor with dual appointments in the Vivian L. Smith Department of Neurosurgery and the Department of Pediatric Surgery at the McGovern Medical School. “After we determined that methotrexate can be infused into the fourth ventricle without causing neurological toxicity, and that some patients with recurrent medulloblastoma experience a beneficial anti-tumor effect both within the fourth ventricle and at distant sites, our next step was a dose-escalation study to determine the optimum dose of the agent.”

Joining a Clinical Trial

Riley was among the first participants enrolled in the clinical trial at Children’s Memorial Hermann Hospital, the only such study under way in the world. In a surgery that took place on Nov. 3, 2015, Dr. Sandberg removed as much of the tumor as possible and placed a reservoir for the direct delivery of chemotherapy – a catheter and plastic disk covered by a rubber balloon underneath the skin at the back of Riley’s neck.

Riley and other children who participate in the trial undergo three cycles of chemotherapy and an MRI before and after treatment. Each cycle includes an infusion on Monday and Thursday for three weeks, followed by a rest week.

The Dedication of Loving Parents

Over the next three months, Riley’s parents, Melissa and Jeff, made the 16-hour round trip twice a week from their home in Arkansas, to Houston. “Riley’s dad didn’t want me to make the trip alone,” she says. “Both of us have remarried and have other kids, which made it difficult to find childcare that would allow us to stay in Houston during Riley’s treatment. So we chose to drive down and back the same day.”

On January 29, 2016, just before Riley completed the clinical trial, Melissa posted an update on her Facebook page. “The treatment is working – The plan is to continue the same treatment and then start another round at Arkansas Children’s Hospital. We are beyond excited!!!!”

“Once we’ve shown that the treatment is safe and the child is responding to it, we’re happy if we can find a pediatric oncologist to continue it,” Dr. Sandberg says. “Riley came to us from Arkansas and had a dramatic response. Her parents are unbelievably dedicated, leaving no stone unturned to help their daughter, including making the 16-hour round-trip drive to Houston twice a week. They’re good people, and Riley is the sweetest kid. We’re thrilled to get this kind of positive response to the treatment without the toxicity of systemic chemotherapy, and we’re grateful to Riley’s oncologist for continuing the treatment in Little Rock.”

Melissa describes the family’s experience in Houston as very positive. “I loved Dr. Sandberg,” she says. “He’s personable and caring and extremely passionate about what he’s doing to help kids. And he was great with Riley.”

As for Riley, she takes it all in her stride. “We’ve been fighting cancer for so long that it’s become a part of her daily life,” Melissa says. “We’ve always been honest with her, and we always listen to what she tells us. She’s never said, ‘Okay, I’m done with this.’ She takes it with a grain of salt and is doing amazingly well considering how much she’s been through and how different her life is from the lives of other kids.”

For more information about Dr. Sandberg's current brain tumor trials, including information on how to qualify and participate, visit http://childrens.memorialhermann.org/pediatric-brain-tumor-trial/, or contact Bangning Yu, M.D., Ph.D., by email at Bangning.Yu@uth.tmc.edu or call (713) 500-7363.

Disclaimer: The outcomes reflected in this patient experience are specific to this patient and are not outcomes that are guaranteed or should be expected for any other patient in this clinical trial. A decision to join this clinical trial should not be made on the basis of the outcome for this individual patient.