A Jefferson County girl and her family want to make sure they give back after receiving help when they faced a life-threatening medical emergency.
Harper Shamus, 7, of Arnold was diagnosed with an inoperable brain tumor two years ago. She underwent emergency surgery in August 2022 when she got a shunt to relieve the pressure on her brain, and she goes to Siteman Kids at St. Louis Children’s Hospital every four months so Washington University physicians may monitor the tumor.
Diana Shamus, Harper’s mother, said the family decided this year to participate in the National Brain Tumor Society’s Gray May event, which is held every May to raise funds to make lasting change for the brain tumor community, according to the NBTS website, braintumor.org.
The family collected pajamas, toys and art supplies from May 1 through June 3 and delivered hundreds of items to Siteman Kids on June 4, Diana said.
“Every year we want to do something for them because they did so much for us,” she said. “Everybody was so giving. When we started boxing this stuff up, it felt really good to help the kids who are not as lucky as Harper is.”
Fortunate outcome
Diana credits Sarah Kizer, owner and director of Kizer Academy, with saving Harper’s life.
Kizer and members of her staff noticed Harper struggling to maintain her balance and her hands shaking when she held a cup or tried to use scissors.
“I was getting a sense that something was off,” Kizer said. “I didn’t know the severity. I sent her mom videos of what we were observing to share with doctors because it may not be mirrored at home. It was like building a case that something wasn’t right. Her mom took the advice and ran with it.”
Diana said she contacted Harper’s pediatrician, Dr. Christina Ojascastro, who referred her daughter to the neurology department at Children’s Hospital.
On Aug. 19, 2022, Harper had an MRI at St. Louis Children’s Specialty Care Center – South County.
“It’s a day I will never forget,” Diana said.
She and Harper had just stepped out of the care center when a nurse ran after them holding a phone.
“I said, ‘Did I leave my phone?’ She said, ‘No, I have the director of neurosurgery on the phone.’ They told me (Harper) had a fatal amount of fluid built up on her brain, and she needed emergency surgery and that she had a brain tumor,” Diana said. “In that moment, I was like, ‘Oh, my gosh.’”
Diana said she drove Harper to St. Louis Children’s Hospital, and her daughter was immediately moved to the Intensive Care Unit, and the next day, Harper underwent surgery.
“(We needed to) relieve the pressure that was building up from the tumor that was affecting the passages that would allow the cerebrospinal fluid, which floats around the brain and spine,” said Dr. Mohamed Shebl Abdelbaki, Harper’s primary neuro-oncologist and a Washington University pediatric oncologist for Siteman Kids at St. Louis Children’s Hospital.
“The surgeons relieved it by placing the shunt. Then we got a biopsy of the tumor.”
Abdelbaki said Harper has a low-grade glioma, but because of where it is, the tumor cannot be removed.
“It is the most common pediatric brain tumor,” he said. “In more than 50 percent of the cases, the tumors are in locations that are not resectable.”
Abdelbaki said Harper improved significantly after the shunt placement, and the tumor has only mildly increased since it was discovered.
“It has been two years, and Harper has not had any symptomatic regression,” he said. “She is doing much better than before. She will require some therapy at some point, and we expect she will do well.”
Diana said she and the rest of the family, including Harper’s father, Tony Shamus, and sisters, Hailey and Kaitlyn Grace, celebrate Harper’s diagnosis every Aug. 19 with a brain-shaped cake.
“I like to have that,” Harper said.
Rallying for Harper
Diana said Harper spent 20 days in St. Louis Children’s Hospital following the diagnosis, adding that she was overwhelmed by the support the family received during that time.
A GoFundMe account was created and raised about $10,000, which covered nearly all of Harper’s medical expenses, Diana said.
“It was crazy to see who donated,” she said. “It was people I knew from high school. My clients (from The Beauty Mark Hair Salon in Arnold). Someone donated money from a lemonade stand.”
Students and staff from Harper’s school, the Fox School District’s Lone Dell Elementary School, also showed support, even though the youngsters had not started attending classes there at the time.
Because of the surgery, Harper didn’t start attending class until Sept. 12, 2022, and three days before her first day of kindergarten, the sign outside the school featured a message that said, “Lone Dell loves Harper.”
“The school community is really behind her in everything,” said Stephanie Rosenthal, Harper’s kindergarten and first grade teacher. “All of the teachers know about her. Our school community is really awesome when it comes to helping families.”
Diana said Rosenthal sent her family a video of Harper’s kindergarten classmates while the youngster was in the hospital.
In addition, Lone Dell Principal Jim Ray contacted Diana to see what the school could do for Harper.
“I think (Rosenthal) loves Harper so much,” Diana said. “She has been huge for her development. She texts me videos to watch with (Harper). She went above and beyond for Harper.”
Diana said the community continues to support Harper. For example, Harper has no problem selling Girl Scout cookies, and when Diana posted a message on social media about the Gray May collection, donations started flooding in.
She said Rosenthal collected items from families in Harper’s class, and MAC (Movement Arts Center) dance studio in Arnold, where Harper dances, held a collection throughout May. Customers from The Beauty Mark brought in items; and friends, families and others contributed to the drive.
“People really care about her,” Diana said. “I was worried about getting the donations to Siteman. I had to fold all of my seats down in my car (to get all the donations inside). They were shocked. They brought these little carts, and they were like, ‘Oh, that is not what we were expecting.’ It felt really good.”
‘Sweetest little girl’
Harper said she loves to dance and draw pictures of mermaids, animals and baby unicorns.
“I have been dancing since I was 2,” she said. “I get to do all of the stuff.”
Diana said Harper is part of a competitive dance team at MAC, in part to help the family monitor if the tumor is affecting her daughter’s balance.
Rosenthal said Harper is a hard worker and loves making new friends.
“She is just the sweetest kid you could ever meet,” she said. “She tries so hard and wants to do the best she can.”
Kizer said Harper delivers Girl Scout cookies in person, and she stays in touch with Diana at The Beauty Mark.
“She is just the sweetest little girl, and I am so happy to see she is thriving,” Kizer said.
Diana said the tumor is not holding her daughter back.
“All in all, she is living a completely normal life with me watching her like a hawk,” she said.