BANNER — There was no warning — in the course of just a few days Shayla Schielein went from being a normal 8-year-old to a cancer patient.
Shayla seemed fine when she left for school at Canton’s East View Elementary the morning of Jan. 11, 2017. Just before the end of the school day, Shayla’s mom, Mallory Schielein, got an urgent call from the school.
“They said her stomach hurt. She was doubled over in pain,” said Mallory, who rushed to the school. She could hear her daughter screaming before she even walked into the building.
Mallory’s first thought was that Shayla’s appendix had burst. She headed to OSF HealthCare Children’s Hospital of Illinois in Peoria.
“The whole time Shayla was in the backseat crying and praying,” said Mallory. “My child is not someone who exaggerates.”
Tests revealed that Shayla’s liver was twice its normal size and her spleen was also enlarged. She was admitted to the hospital, and the next morning doctors began talking about cancer. On Friday, Jan. 13, a bone marrow biopsy determined Shayla had acute lymphoblastic leukemia, or ALL, the most common childhood cancer.
“That afternoon they took us into a room with doctors and nurses and social workers and explained her diagnosis,” said Mallory. “Then they asked us to choose if we wanted to treat her at St. Jude or at the oncology unit at Children’s Hospital. We had 30 minutes to decide because it was Friday afternoon and they had to fax in all the paperwork.”
Shayla’s doctors weren’t wasting any time — ALL is a fast moving cancer, and Shayla was in a lot of pain. As the family learned more, the decision was easy — St. Jude Children’s Research Hospital in Memphis has a 94 percent cure rate for ALL, the best cure rate in the world.
“That was the deciding factor,” she said.
Doctors wanted to transport Shayla to Memphis the next day, but an ice storm prevented it. On Monday morning Shayla was loaded into an ambulance for the 7-hour trip. Mallory rode with her daughter, and Shayla’s father, Vern Schielein, and 2-year-old brother Gabe followed in the family’s car.
“It was the longest 7-hour drive ever,” said Vern. “I was worried about what’s going to happen to my kid, and I was worried if I would have a job when I got back. It was such quick notice.”
Vern, who is manager of the repairs department at Maui Jim Inc., said his fears ended up being unfounded — his employer has been wonderful. Mallory works for OSF HealthCare as a patient care technician, and she also took extended leave. The family was told they would be in Memphis for three months.
While the Schieleins had some idea that St. Jude would help with expenses related to Shayla’s illness, they were surprised by the extent of assistance.
“Once we got down there a person from St. Jude met us and told us that, 'Whatever insurance doesn’t take care of, we will take care of,'” said Vern. “They also take care of gas and food. They said all you have to do is take care of your child.”
While Shayla was in the hospital her parents stayed in a room right next door.
“All hospital rooms have a parent room attached,” said Vern.
After one week Shayla was released from the hospital and sent to the Ronald McDonald House while undergoing daily outpatient treatment.
“At the Ronald McDonald House, they've got everything covered,” said Mallory. “There’s a huge pantry with food, and a refrigerator filled with every type of milk you can imagine. Every week they gave us a gift card to Kroger and Target.”
Family meals were provided several times a week by volunteers who brought in the food and prepared it, said Vern.
There was also moral support. In addition to the grandparents, who moved to Memphis during the treatment to help care for Gabe, the Shieleins also got much-needed support from other families dealing with an ALL diagnosis.
“You don’t want to be a part of the St. Jude family, but once you are, you are truly part of the family,” said Mallory. “Us moms would have our moments when we let it all out to each other. Your friends or family can’t understand it in quite the same way. It’s like our own little counseling sessions.”
Shayla started feeling better a lot sooner than she’d imagined. By the end of the first week of aggressive treatment, she was ready to enjoy the many games and activities offered to the young patients.
“I was thinking I was gonna be sick the whole time, but once I started feeling a little better, I played the whole time I was there,” she said.
Fun is part of the treatment at St. Jude. It distracts the children from a very stressful situation, said Vern.
“Stress kills. Stress will amplify the cancer, so they constantly have stuff to keep kids' minds off it,” he said.
Though Shayla was in remission by her second week in Memphis, her treatment was far from over.
“Chemo kills off all the cells, and they give you a steroid to bring back the good cells,” Vern said. “A good friend of ours, a cancer nurse at the St. Jude Clinic in Peoria, told us that it’s like a snake coming out of the hole — you hit it over the head and it goes back in the hole. It comes out again, and you hit it again. The reason the beginning stage of treatment is so hard is because they want to see how aggressive the cancer is. Then they adjust the chemo.”
When the family came home in April 2017 they were greeted with a newly remodeled house. Mallory’s twin brother had taken the lead, painting, ripping out carpet, and installing easy-to-clean flooring — Shayla was going to have a compromised immune system for a long time.
At home, Shayla suffered many side effects from treatment. She had issues with her Mediport, an implanted device that makes injecting medicines and taking blood samples easier. Doctors had to replace it three times. And she didn’t tolerate steroids well. The powerful drugs damaged her bones and caused a lot of pain. Because of bone damage, Shayla now wears ankle braces to help prevent falls. And she suffered from numerous infections that caused fevers, a dangerous situation in someone with a compromised immune system.
“People with a compromised immune system create a toxin when they have a fever,” said Vern. “If her temperature reached 100.4, we had one hour to get her to the emergency room.”
Shayla had six or seven hospital stays just because of fevers, her mother said.
“She spent all summer in the hospital last year.”
This summer has been better. Though Shayla takes about 100 pills a week and gets chemotherapy every Friday at the St. Jude Midwest Affiliate Clinic in Peoria, she is feeling better.
“About two months ago we got the nausea under control,” said Mallory. “Just these last few months, we feel like we have a normal child back.”
On Monday morning Shayla enjoyed the beautiful day by driving her brother around in the neighbor’s golf cart. Already, Shayla is thinking about giving back — she is planning a fundraiser for St. Jude, a garage sale Aug. 9, 10 and 11 at her grandparents’ home on Airways Road in Bartonville. This fall, the 9-year-old will be able to return to school as a fourth grader, having completed the second half of second grade and all of third grade mostly through homeschooling.
Though life is not yet back to normal, Shayla’s parents are feeling a bit more relaxed. Shayla is now in the maintenance stage of her 120-week treatment, which she’s more than halfway through.
“We see the light at the end of the tunnel,” said Mallory. “We have more treatment behind us than ahead of us.”
They make trips to Memphis every four months for checkups. During their sixth trip this past week, Mallory was hoping to get good news — that Shayla could start going to Memphis every six months instead of every four. Though the drive is long, the family actually enjoys spending time at the St. Jude hospital.
"I kind of miss it — we feel at home when we walk in," she said. "Even Gabe — he was just 2 when Shayla was diagnosed, so he doesn't remember life before cancer — he loves it down there cause there are so many toys and games."
Leslie Renken can be reached at 686-3250 or firstname.lastname@example.org. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.