Karen will never forget the Sunday morning her daughter woke up with a limp, dragging her foot. Megan, a star endurance runner at her suburban Chicago high school and all-around active teen, was probably dehydrated after a busy weekend, her mom remembers thinking.
“By lunchtime she couldn’t walk normally at all,” Karen recalled. “That’s when we thought ‘that’s not dehydration. Let’s get to the emergency room.’’’
At their local hospital, Megan’s symptoms became more troubling; she couldn’t walk without someone holding her up. The then-14-year-old was transferred to a nearby larger hospital that night, where she got a partial MRI scan. There, her legs “started twitching uncontrollably.”
“It was crazy scary,” Karen said. “Just 24 hours earlier she was perfectly fine.”
Doctors told the family the scan revealed that Megan had a rare malignant tumor, a high grade glioma, in her cervical spinal cord and needed to seek further treatment right away at Ann & Robert H. Lurie Children’s Hospital of Chicago.
Hours after arriving at Lurie Children’s, tests showed the tumor was compressing her spinal cord, and Megan was losing neurological function by the minute. Spinal cord tumors like the one Megan had can lead to loss of motor and sensation in her extremities, respiratory failure and paralysis.
Surgery was necessary as soon as possible; the teen was brought from the MRI suite to the operating room under the same anesthesia.
Megan’s surgeon was Dr. Tadanori Tomita, a renowned neurosurgeon and the Division Head of Neurosurgery at Lurie Children’s. He is also the Director of the Pediatric Neurosurgery Laboratory at Stanley Manne Children’s Research Institute in Chicago and Co-Director of the Falk Brain Tumor Center at Lurie Children’s.
During the six-hour procedure, Dr. Tomita removed as much of the cancerous mass from the spinal cord as possible while preserving as much neural function of the spinal cord for Megan as he could. Dr. Tomita’s team used a surgical microscope and intraoperative neurophysiological monitoring, meaning they closely watched Megan’s brain, spinal cord and peripheral nerve function to help prevent permanent damage to the teen’s nervous system that could occur during surgery.
Karen and Megan’s other mom, E.J., agreed that the staff that works with Dr. Tomita helped explain every detail of the surgery.
“Everybody involved in Megan’s care was just really caring and genuine,” Karen said.
Just four days after the grueling surgery, Megan began three weeks of intensive physical therapy at a rehabilitation clinic a block away from Lurie Children’s. Karen said the resilience is typical for her strong and athletic girl, who usually finished her 3-mile cross country races in about 18 minutes.
“That’s what she does – sets records,” Karen said.
The family continues to come to Lurie Children’s every few months so Dr. Tomita and a team of others can track Megan’s progress. Because her tumor was cancerous, Megan completed proton radiation treatment and continues to undergo outpatient oral chemotherapy.
Still, her life looks like a typical – albeit impressive – teenager’s. She maintains a GPA north of 4.0 and continues to excel on her school’s cross country and track teams. She recently traveled to Canada for a school choir trip. On Dec. 30, she and her supportive twin brother, Andy, celebrated their 15th birthday in Walt Disney World, also bringing in the New Year. The firework-filled celebration never felt more appropriate.
“We just keep counting our blessings and know that we’re getting the most amazing care that we can get,” Karen said.