Experts Stunt Inoperable Brain Tumor with Innovative Treatment Plan
Family comforted by compassionate, team-based care
A ninth-birthday miniature golf outing turned from fun to scary for Daniel Alexander of Westville, Ind., when he fell, hit his head, and suddenly couldn't control his limbs. His mother, Karen Alexander, vividly remembers her son's body going completely limp, as he lay paralyzed for a brief moment. A CT scan and an MRI at a Valparaiso hospital showed a brain tumor.
The Alexanders asked for Daniel to be transported to the University of Chicago Medicine Comer Children's Hospital -- about an hour away by ambulance. He'd previously received great care there during a corrective procedure performed by pediatric plastic surgeon Russell Reid, MD, PhD. With skilled, efficient team-based care and innovative chemotherapy techniques, the growth of Daniel’s tumor was halted and no longer threatens his well-being.
Daniel has a rare, low-grade tumor called an infiltrating astrocytoma -- grade II in the four-tiered astrocytoma grading system. The tumor is located in his medulla oblongata, which is the part of the brain that connects to the spinal cord. Though not a high-grade malignancy, the tumor was in a particularly vulnerable spot.
“If it hadn’t been in such a critical location, we would have observed the tumor with scans, and only would have given him chemotherapy if it grew,” said pediatric hematologist/oncologist Charles Rubin, MD, who supervised Daniel's chemotherapy. As it was, the tumor needed to be controlled in order to prevent damage and disability. Rubin, director of the Pediatric Brain and Spinal Cord Tumor Program at Comer Children's, explained that the tumor led to a very tight fit of the medulla and spinal cord within the opening of the skull. The lack of the normal cushion around that area allowed a minor fall to result in the temporary paralysis that Daniel experienced.
Radiation was not a good option for his young, developing brain, and the tumor was so intricately entwined with Daniel’s brain stem that it couldn’t be removed surgically. After a cautious biopsy, Daniel's treatment team started a 48-week chemotherapy plan.
The plan involved a complex schedule of oral medications that were given at home by Daniel's parents, with periodic visits from a home care nurse to administer an intravenous medication. Comer Children's participated in a recent study testing this approach against the more common intravenous protocol, which involves hours at the hospital every week. The home-based treatment may have better outcomes and is much easier on patients and their families.
The Alexanders are deeply grateful that they could handle most of Daniel’s therapy at home, with only an occasional trip to the hospital. The treatment team gave them a detailed calendar showing the dates and times to give their son various medications. Rubin said the family did a great job following the intricate schedule to the letter.
At one point, Daniel developed a blood clot in his heart and was rushed to Comer Children's via the University of Chicago Aeromedical Network (UCAN), the medical center's emergency helicopter service. “When he landed, someone from the hospital called us on our cell phone and said, ‘He’s here and will be in his room in 5 to 10 minutes,’” Karen recalled. An escort was waiting at the security desk to guide his family to the pediatric ICU. During his seven days there, UCAN team members stopped by several times just to see how Daniel was doing.
Two years later, Daniel's chemotherapy is behind him. While he's still cautious about risking a fall that could send him back to the hospital, he's been cleared for all of the activities he loves, but couldn't do while undergoing treatment: baseball, basketball, soccer, roller-skating, and riding his bike and his all-terrain vehicle. Daniel is back to being a normal 10-year-old.
The family returns to Comer Children's every three months for MRIs and lab tests, which may soon be reduced to less frequent visits. Rubin explained that low-grade astrocytomas are more like a chronic disease than an acute one, and Daniel’s could start to grow again. If it does, the team will be ready, either with another round of chemotherapy, or with radiation if Daniel’s brain is mature enough.
Karen said the dedicated specialists at Comer Children’s have been lifesavers for the whole family. In addition to Rubin and the other physicians and surgeons who consulted on Daniel's case, she is especially grateful to oncology nurse Kelly Kramer and social worker Michelle Ishler. Karen also extends special thanks to the Child Life and Family Education team, whose specialists supported the family by sitting in on meetings, taking notes, arranging for stays at the Ronald McDonald House, getting Daniel art supplies to occupy him during his stays, and always being on hand with information and reassurance.
Karen also recalls that Daniel was never treated like a baby. “Everyone knew how to talk to him,” she said. “They explained things so that he could understand, and he was comfortable to ask his own questions.”