Covington teenager battling rare brain disorder back home

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ALLEGHANY COUNTY, Va. (WDBJ7) The night before Ethan Thompson’s world changed, he was doing what he loved. It was time for the Alleghany High School Christmas concert and Ethan was ready to play in the band. His father, Loren, remembered how he looked.

“Just that look of peace and contentment,” he said. “He absolutely loves his music.”

A picture of Ethan from that night shows a wide-eyed teenager wearing a tuxedo, bow tie, and a smile from ear to ear. But behind that joy, there was a pain in his head that was growing. The next day it became unbearable. Loren and his wife, Marcy, took Ethan to Roanoke Memorial Hospital. He wouldn’t leave a hospital bed for months.

Doctors found a brain tumor, “as big as a lemon,” Loren said. It was diagnosed as a pilocytic astromcytoma. The “astro-“ refers to the cancerous cells that look like stars, he added.

“When we heard… we lost our minds for a little while,” he said. “But when we told Ethan he just put his hands behind his head and said, ‘So when are they gonna take it out?’” Ethan then told his mom and dad he thought he felt something at the base of his brain stem for a while. He just didn’t think much of it and had too many other things to do like acing all of his classes, playing more than a half dozen percussion instruments, and squeezing time in for friends and Xbox.

Ethan went into the hospital on December 17th, his tumor was removed on the 21st, the type of tumor was known on Christmas Eve. But his health wasn’t improving. He could breathe on his own for nearly five days. Even more concerning was that he wasn’t talking. The medical team at Carilion all came to the same conclusion—Ethan had developed posterior fossa syndrome, a relatively rare condition that leaves the patient unable to speak or walk. Its exact cause isn’t known, although researchers debate whether it’s from the surgeon cutting into the vermis of the brain or if its from the readjusting the organ goes through when a mass the size of a fruit is taken out.

“They're perfectly awake they can even follow commands and do what you ask them to do but no speech,” said Dr. Gary Simonds, Chief of Neurosurgery at Carilion. “They won't generate any speech so it's a bizarre condition.”

In addition to posterior fossa syndrome, Ethan had multiple seizures and was transferred to three other hospitals to better treat his recovery. Marcy was by his side at every stop, first to Charlotte, then back to Roanoke, then to Lynchburg and finally a weeks-long stay at a hospital in Atlanta, Georgia.

“I spent 159 days in four different hospitals with Ethan all together,” she said.

In late May, Ethan’s recovery progressed well enough for him to go home to the Thompson’s small home outside Covington that Loren’s great-grandfather built generations ago.

“It's like a roller coaster, you're going to have your ups and you're going to have your downs,” Loren said about his son’s tumor and subsequent complications. “But you just don’t let the downs get you too down.”

Loren hasn't stopped driving hours to work as a Captain at Station 4 for the Roanoke Fire Department. It's one of Loren's other families to rally around his son, helping renovate their home to fit a wheelchair.

"Nothing about his attitude or outside appearance shows that anything is going wrong with his personal life and that's pretty amazing to all of us,” said fellow firefighter Mike Moomey.

The help also comes from fundraisers by kids and parents in Alleghany County and from church groups that just finished this wheelchair ramp. All so the Thompsons can keep on living, now that they're back together in their house. 

“But it's just a house,” said Loren. “The home is my family.”

The prognosis is thought to be good for Ethan, there's just no telling when his symptoms may fully go away. A family friend started an online fundraiser to help the Thompsons buy a wheelchair van to take Ethan to doctor's appointments.