Omaha hospital treats Grand Island girl for AVM

Posted at 12:03 PM, Dec 29, 2015
and last updated 2015-12-29 13:03:32-05

This Christmas, thousands of kids will be wishing for presents. That big toy, or some cool gadget. Dylan Tolen, an 8-year-old girl from Grand Island, has a simple wish. A smile.

For the past few months, no matter what she does, she can't express her joy, or any emotion. Her face is numb.

When Dylan was 1 year old, doctors discovered she had a brain arteriovenous malformation, or AVM for short. It's a tangle of abnormal blood vessels connecting arteries and veins in the brain.

Brain AVMs are rare and affect less than 1 percent of the population.

If undetected or untreated, they can result in brain damage or stroke. Dylan's had more than a dozen surgeries to try to remove the entire cluster. She's had to relearn how to walk four times.

"June of this year, right before her eighth birthday, they did gamma knife radiation by her brain stem," explains Melissa Tolen, Dylan's mom.

They still aren't in the clear, but the radiation seemed to work. Unfortunately, that strong radiation produced side effects.

"Damage and swelling to the brain. It caused difficulty with vision, difficulty with walking. She's had problems with nausea," said Dr. Jeff Cooper, with Nebraska Medicine's Hyperbaric Oxygen Therapy Medicine Center.

Perhaps the worst part, Melissa says, was when the Bell's palsy came. Bell's palsy is temporary paralysis, and appears in Dylan's face. It's left the girl, already fighting to stay healthy, fighting just to smile and frown. 

Dylan's currently getting hyperbaric oxygen therapy to help the side effects. She lays in a tube breathing in concentrated amounts of oxygen.

On Christmas Eve, she'll receive 37 of 60 treatments. Each lasts two hours. Dylan passes the time watching movies. Her favorite movie to watch is Disney's 'Inside Out," which is all about the emotions she wants to show. 

"She still can't really smile, and that's hard for people to understand. She thinks she's smiling but we can't see it," Melissa said.

During the time, mom Melissa sits close. She says she prays, reads, and thinks about everything her family has been through.

"It's just taking it a day at a time. Sometimes an hour at a time. It makes things a lot simpler."

She says of course she has wishes for the AVM to go away, and the nausea and vision problems to go away.

Melissa and Dylan would rather be at home in Grand Island instead of three hours away in Omaha. But this holiday, they say it's about the simpler things. They will patiently wait for those big wishes to come true, and hope for a little one.

"We're getting close. It's been a little hard on this downhill side, but we're going downhill. We've made it to the top, and now we're going down," Melissa Tolen said.