DUBUQUE — In many ways, Dubuque 7-year-old Ariel Davis is a typical little girl. She likes the color pink, pretty nail polish, reading books at the public library and breakfast at McDonald’s. But the day after Thanksgiving, after getting an MRI to discover why one of her eyes was rotating inward, her family got devastating news — Ariel has a brain tumor.
Diffuse intrinsic pontine glioma, or DIPG, is a rare pediatric cancer that causes a tumor on the brain stem. Because of its location on the part of the brain that controls vital bodily functions like breathing and heart rate, the tumor is inoperable.
“It was basically the worst day of my life,” her mother Sheila Turner said of the day she got the diagnosis.
Ariel received six weeks of radiation at the University of Iowa Hospitals and Clinics, and another MRI in March showed the tumor had shrunk to the size of a pea. But a couple of weeks ago, her headaches started coming back — the tumor had started growing again. She began losing motor function in her left arm, hand and leg. Doctors told Sheila there is nothing they can do, and that Ariel has 12 months to live.
“I wake up every day, and it’s like I’m in the middle of a nightmare. Who wants to lose their baby? She’s 7 years old,” Turner said.
Despite the prognosis, Turner said she isn’t giving up, searching for any doctor or procedure that could help. In the meantime, she tries to stay outwardly positive for Ariel and her other daughter, Shalieria Davis, 10, who has her own struggles with sickle cell disease and requires monthly blood transfusions.
“The only thing that keeps me going is I have to keep them going. If they see me sad and going crazy, they’ll do that, too. I have to be their support system,” Turner said.
Sometimes, it feels like Ariel is the one supporting her, she said.
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“Ariel is outgoing, she’s really smart, she doesn’t sit still. She likes to go places. She is the happiest, brightest little girl I have ever met. ... She never stops smiling,” Turner said. “She’ll say, ‘Mommy my head hurts, but I’m still smiling.’ She’s full of life, and she is not letting this slow her down.”
Last week, the family got a little outside support to help with that sunny attitude from the nonprofit organization, Special Spaces. Special Spaces creates “dream bedrooms” for children with life-threatening illness. Ann Decker of Peosta started a Dubuque chapter of the national nonprofit organization in 2014, and she and a team of volunteers have since renovated four bedrooms a year for children in the Dubuque area.
“The whole idea is giving them that special space to feel good in,” Decker said. “I know it’s important, because when I follow up with the families the next day, I’ve sometimes been told that’s the first time that child has slept through the night in months.”
The group works with parents and children to design a bedroom that makes the child happy and also helps the parents. That can mean everything from aesthetics like fresh paint, cheerful decorations and cozy pillows to the practical, like plenty of storage to hide away medical supplies and televisions to help distract children who often spend long hours in bed, recovering from procedures.
“Some of these children’s bedrooms totally look like hospital rooms before we start,” Decker said.
Decker recalled some of the rooms they’ve designed, including a boy who asked for a tree house-style bunk bed with a ball pit underneath, and another who asked for a barn-shaped bed, complete with stars overhead made from twinkle lights.
Special Spaces has no income restrictions for families to apply, and children may be between ages 2 and 19. For Ariel’s room, volunteers sent the family out to have a day of fun while they worked to transform the bedroom she shares with Shalieria. They assembled bunk beds, installed a ceiling fan and painted and brightened the space with a curtains, rugs, art, lights and pillows, all in shades of bright pink. Ariel requested chalk boards to draw on and a vanity to sit at, and she got those, too.
Volunteer Tammi Herbst of Dubuque helped sew individualized pillows for the girls.
“Having a nice place to go to is a great thing,” she said. “When you have somewhere you feel rested in, you feel better about yourself.”
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“It means the world, because at the end of the day, I want her to know just how special she is. I don’t want her to lose faith and confidence within herself,” she said.
There is another factor that makes her appreciate the effort — the example it provides for her daughters.
“She’s so used to being so independent. Right now when she can’t do certain things that she’s used to doing by herself, and she’ll start crying. I’ll let her know, ‘You’re important, and I’m here, and I’ll help you,’” Turner said.
“The important part about the room is to show there are people who care, who will help you, and all you have to do is ask, sometimes.”
When the girls and their mother finally saw the room at the end of the day’s efforts June 30, Turner’s eyes filled with tears.
“I didn’t know this room could look like this, that it was possible for it to look like this,” she said.
Ariel, meanwhile, was exploring the collection of nail polishes set up on the vanity table and smoothing the patterns on the colorful bedspread.
“It’s perfect!” she declared.
l Comments: (319) 398-8339; firstname.lastname@example.org
l Learn more about Special Spaces at specialspaces.org, or by contacting Ann Decker at P.O. Box 6, Peosta, IA 52068 or (563) 580-3146.