Sixteen-year-old Grace deBest bid farewell to cancer as she rang the symbolic gold bell signaling the end of her treatment at Spectrum Health Helen DeVos Children’s Hospital.
It was smiles all around as the pediatric hematology and oncology team joined Grace and her family for the occasion.
The Child Life team created a personalized hand-painted banner that read “Our TikTok pro is done with chemo.”
While in the hospital, Grace often made creative TikTok videos to show others how to pass the time during long chemotherapy treatments.
Now Grace will only see her care team for occasional checkups.
“When our brave, resilient patients like Grace reach this truly amazing milestone of ringing the bell at the completion of chemotherapy, it truly is a celebration for all of us,” said James Fahner, MD, department chief for hematology and oncology at Helen DeVos Children’s Hospital.
Dr. Fahner explained how not only is this a celebration of a young person’s resilience and strength, but “a celebration of the family and friends that helped get them through this sometimes overwhelming journey,” he said.
“Most importantly, it is a celebration of restored health, of a restored future, and restored hope. These young people are an inspiration.”
Doctors diagnosed Grace with T-cell acute lymphoblastic leukemia in 2019 after she sought care for swollen lymph nodes and mono-like symptoms. Grace recalled she looked like a “football player in full gear” because of the swelling.
After just a couple of hours in the emergency department at Helen DeVos Children’s Hospital, her family would hear words that would change their lives forever—your child has cancer.
“You’re not ready for that, and all of a sudden everything changes,” Doug deBest, Grace’s father, said.
Grace’s mother, Kerri, and sister, Maddie, also heard the diagnosis in the hospital that day.
“My first thought was…cancer…you got this,” Grace said. “You can push through.”
Grace remembers a lot of pain at the beginning because of kidney tumors. She spent her first week in the ICU, drifting in and out of sedation. After treatments and several rounds of dialysis, she transferred to an inpatient unit for a full week of additional treatments.
“I was taking 20 something pills every day,” she said. “I would line them up biggest to smallest every day in the morning in order to keep track.”
Support of the community
Grace and her family, who live in the village of Stevensville in Southwest Michigan, appreciate how the local community rallied around them during their time of need.
The Lakeshore High School principal, band directors, teachers, family and friends all made their way to Grand Rapids to check on her.
Grace is a member of her class council, the National Honors Society, the environmental club, diversity club, key club and is the official photographer for the high school band.
“It would be easier to come up with a list of groups that Grace is not a part of,” Doug joked.
Maddie helped pull together a special video of her classmates in hopes of bringing a smile to Grace’s face.
“We had more than 150 kids say, ‘Hi Grace, we miss you!’” she recollected.
Grace received the video midway through a chemo treatment at the hospital.
“I cried,” she said. “I still watch that video a lot to this day.”
Fundraisers, 5Ks and other events soon followed.
“The community truly rallied around our family, and it meant so much to us all,” Kerri said.
The road to being cancer free
Over the course of the next two years, Grace traveled to Helen DeVos Children’s Hospital regularly for treatments and checkups. She also had a roster of in-home care to be managed remotely.
She developed neuropathy from the chemo, which caused her to wake in the middle of the night in such pain she would scream.
“That was definitely the worst part,” Doug said. “We tried to stretch, move, ice, heat, and nothing would take the pain away for her.”
The family had many scares throughout her treatment, with several worrisome trips to the emergency department.
“The staff at the hospital was so great through it all,” Doug said.
“We just love the doctors and nurses,” Kerri echoed. “They are all just incredible.”
The power of a positivity
Grace and her family struggled to maintain positivity at times. Even cracking a smile some days proved to be a true challenge.
“I remember saying, ‘If you can’t be happy, I can’t be happy, so figure it out!’” Grace recalled.
At one point, she told her mom to wear more color and try to be more upbeat.
“We were scared and didn’t know what to do,” Kerri said. “It was a good reality check for us though—and Grace held us to it.”
Grace’s love for photography helped, too.
Drawn to photography since elementary school, she would do photo shoots for her friends. This passion followed through into her teen years.
When she had to stay at home during treatments, she had her photos. She spent hours looking at old photos she had taken of friends, and it kept her going.
Other times, Grace scrolled through Instagram to stay up to speed with her friends at school and look at old photos to relive those memories.
A second home
Grace refers to Helen DeVos Children’s Hospital as her home away from home.
She’s now a part of Teen Council, a group that guides Child Life best practices for other teens in the hospital. She and the council are currently discussing new ideas that are so top secret, she can’t share just yet.
Grace said special touches like the Child Life program make the hospital so much better for the kids who need to stay there.
“I’m almost bummed out that I won’t be coming in for treatment anymore,” she joked.
She plans to stay involved in Teen Council as she’ll have follow-up appointments and wants to make sure every kid gets as great of treatment as she did.
“It was definitely my second home,” she said with a big smile.