Neenah girl saved by Children’s Hospital – Appleton Post Crescent
Editor’s Note: This is one in a series of profiles highlighting children assisted by research and donations through the Midwest Athletes Against Childhood CancerÃ‚Â fund.
NEENAH Ã¢Â€Â” On the surface, Emily De Young is just like any other first grader at St. Margaret Mary Elementary School.
“I like playing instruments in music. I like painting, coloring, drawing,” Emily said. “Mostly I like everything.”
But Emily has a history that many other kids in her class don’t.Ã‚Â She was just 4Ã‚Â yearsÃ‚Â old in 2012 when she had her first brain surgery.
After complaining of pain in her neck and the base of her skull, her mom, Kate, decided it was time to take her to the doctor, where they discovered that Emily had anÃ‚Â ependymoma, a mass that arises from the ependyma, which is a tissue in the central nervous system of the brain. Kate, Emily and her dad, Ben, immediately transferred to Children’s Hospital in Milwaukee where they eventually learned that the tumor had squeezed her brain stem, causing swelling and water to fill her head.
Within 12 hours, Kate said doctors had drained the water from her head and were planning for her first surgery to remove the brain tumor.
“It was pretty hard because we didn’t know what to do,” Kate said. “If it weren’t for Children’s Hospital and the MACC Fund, she wouldn’t have made it. I was facing the loss of a child. We did a lot of praying.”
Because the surgeons were unable to get all the cells out of Emily’s brain duringÃ‚Â the first surgery, they had to perform a second shortly after. The second eight-hour surgery was successful, and Emily was tumor free.
That’s when the struggles truly began, Kate said. Dr. Bruce Hoffman warned the family that Emily would get worse before she got better, and that’s exactly what happened.
SheÃ‚Â developed posterior fossa syndrome, a neurological disorder that inhibits motor skills and compares to having a full-body stroke.Ã‚Â She couldn’t talk, swallow or blink her eyes. She had “rebooted.”After six weeks of trying to get her to talk and move, she had a breakthrough. During the night, Emily switched on a nightlight, and only days later, she was moving and eating on her own.
Emily spent a total of 11 weeks in the hospital for 35 radiation treatments and recovery and still undergoes therapies.
Now, Emily is herself again, even though she still remembers her time in the hospital. Kate said many times, Emily will mention a nurse, whether it be Marilyn, Nick, Mary and many of the 25 others, and reminisce about walking through the healing garden or riding her tricycle down the hall with “her best friends.”
“They saved her life,” Kate said. “At one point, we had eight teams of people working with us. We had the rehab team, the neurologists, the pediatricians, the radiation oncologist team and more. All of those doctors teamed together. If it weren’t for them and coordinating their efforts, she would not be here. I love them, and they were able to do what they were able to do because of generous donors.”
Grace Ebert: 920-993-1000, ext. 252, or firstname.lastname@example.org; on Twitter @GRACE_EBERT