Shelby Erb is doing her best to lead a normal life.
The 16-year-old enjoys listening to music, hanging out with her friends and making tie-dye tapestries that decorate her room.
She wants things to do. She wants to get out of the house and have fun.
Shelby is making the most of her remaining days as her body fights a losing battle with a devastating cancer that took her leg last year, and will likely claim her young life.
“I don’t like to think about it or be in my house,” Shelby said. “I try to get out as much as I can so I don’t have time to think about it. I stay busy and just like to do things so I’m not locked at home dwelling on it.”
Shelby’s dad, Rich Erb, said it was around one year ago that his daughter fell down the stairs of their Beatrice home after their dog ran into her. The fall prompted a visit to Beatrice Community Hospital and Health Center for what they speculated may have been a torn meniscus.
“It hurt her right leg right behind her knee,” Rich said. “That happened to be where the tumor was. We went to the Beatrice hospital and they saw the tumor and got us up to Children’s Hospital in Omaha to get things looked at. It was at Children’s that they told us.”
Shelby had a peripheral nerve sheath tumor in her leg. The cancer affects a patient’s nerves. It's a painful condition.
“After they found out, they came in and told us that it was cancer,” Shelby recalled. “I just started crying, screaming and freaking out. Then they shut the door and let me be alone so I could just have a second.”
Her condition was diagnosed on April 20, 2017. On May 4, doctors amputated most of her right leg.
Doctors hoped the amputation would eliminate the cancer and Shelby would lead a full life, cancer-free.
The celebration was short lived. By August the cancer was back and this time it had spread.
“She just started to learn to walk with her prosthesis and she got cancer again in her lungs and chest wall and it hurt for her to put pressure on her walker,” Shelby's mother, Linda Erb, said. “So then we were just going to wait a little bit and see if the chemo would do any work. Then she started having problems with her left leg and now the cancer has just spread everywhere.”
Shelby said that at one point while on chemotherapy her weight dipped to around 70 pounds. She had to have a feeding tube until her weight exceeded 100 pounds.
With treatment slowing Shelby down more than the cancer inside her, she made the decision to quit treatment after around four months and returned home to some semblance of a normal life for as long as she has.
“She just had scans done last week and it started in her left breast, chest wall, hip and leg,” Linda said. “Everything that was there prior had doubled in size in a month. It’s pretty much when they said we need to get hospice involved. Right now, they’re here for moral and emotional support."
“Because I’m so young," Shelby added. “Because I’m really young.”
Rich said doctors have estimated Shelby has four months left, but nobody can say for sure.
It could be two. It could be six.
Shelby is on strong medication for pain and takes pills every three hours. The medication allowed Shelby to sleep through the night on a couple of occasions, the first in recent memory.
She’s no longer attending Beatrice High School, where she was a junior.
“When we found out how much time she had left she was in school and the school was working with us to try and get her an education and meet all the needs she had because she couldn’t just walk down the hall like everybody else," Rich said. "They were really good to us. When we found out we took her out of school and let her enjoy what time she has left. We let her do what she wants, within reason.”
Shelby is planning to get matching tattoos with her mother, and another matching tattoo with a close friend.
The family traveled to Florida earlier this month, thanks to the Make-A-Wish Foundation, where Shelby was able to swim with dolphins.
Shelby, her parents and two adult brothers are doing their best to cope with the situation and take advantage of their time, with the assistance from their community.
Rich, who works for the Beatrice Board of Public Works in the electric department, and Linda, a manager at Burger King, both said their employers have been greatly accommodating in giving them time off.
“Of course she wants me to stay home with her all the time and nowadays you have to have two incomes to make ends meet,” Linda said. “We’re scraping by doing the best we can. Eventually, I’ll probably have to go back to work. For now I’m going to try and stay home because she can’t be home alone in case she would fall. She’s so drowsy from medicines and she can’t use her walker very good anymore.”
Friends have set up Facebook pages to get the word out about fundraisers to help the family. The page can be found by searching "Shelby Erb fundraiser" on Facebook.
“We couldn’t ask for better bunch of people than this community,” Rich said. “It really is overwhelming. It surprised me very much that all the fine people, even people you don’t even know, donate money or cook a meal for us or something. Somebody put $400 on my utility bill for us. I don’t know who it was, but we appreciate it. It’s the kind of stuff that maybe after this is done I can do something for others and pay it forward like they’ve done for us.”
Nobody knows exactly how much time Shelby has left, but her family knows how they’ll remember her.
A gifted artist with a beautiful smile who somehow managed to stay positive after getting the worst news imaginable.
Reach Scott Koperski at firstname.lastname@example.org. Follow him on Twitter @ScottKoperski.