Lacey McNeil, 10, is a lot like most kids her age.
She’s active at school. She plays soccer and softball, and she loves rollerblading. She runs cross country, too.
Her parents, Scott and Alicia McNeil, say she’s outdoorsy, funny and incredibly clever. She can be sassy, too, in the very best of ways.
And she loves country music.
“I just love Walker Hayes,” Lacey said.
She has two big brothers, Lorin, 15, and Tyler, 12. They’ve got a Pomeranian named Duke, as well as nearly 50 chickens at their family home near Lake Ann, in northern Michigan.
Her favorite chicken is Little Peep. Lacey can pick her out of the bunch in just a second.
“She babies Little Peep,” Alicia said. “She finds worms and treats for her. That chicken is totally spoiled.”
On most days, you’d find the McNeil family tending to their flock of chickens and maintaining a well-kept vegetable garden and a small apple orchard at their home. Mom and dad stay busy hustling all three kids to various sports and activities.
But in August 2021, that all changed.
‘We were really shocked’
Lacey had her well-child checkup that month with the family’s local pediatrician, who noticed she had dropped dramatically in her growth chart.
“She has always been small in stature,” Alicia said. “But we wanted to try and figure out what was going on.”
The family soon received a referral to Spectrum Health Helen DeVos Children’s Hospital in Grand Rapids.
“I thought we were meeting with the hematology team, which I know goes hand in hand with oncology,” Alicia said. “But then the oncologist did the exam and felt some lymph nodes that were enlarged. I wasn’t sure what to think at that point because I wasn’t really thinking cancer.”
A chest X-ray and CT scan revealed a tumor the size of a softball in Lacey’s chest.
“The tumor was really big on her small body,” Alicia said. “It was compressing her left lung and was set behind her heart as well. We were really shocked.”
Alicia remembered that Lacey had initially been doing fine while playing soccer, but later began having trouble running a mile.
“Now we knew what was really going on,” she said. “She was really only using one lung.”
“Is that why I can’t hold my breath as long as my friends?” Lacey had asked.
The care team performed a biopsy and diagnosed Lacey with an inflammatory myofibroblastic tumor. They also identified a targeted genetic change in her tumor, a mutation in the ALK gene, or anaplastic lymphoma kinase.
Lacey first met with Allison Close, MD, pediatric oncologist at Helen DeVos Children’s Hospital. She quickly involved David Hoogstra, MD, who is now the principal investigator of Haworth Innovative Therapeutics Clinic at Helen DeVos Children’s Hospital.
Dr. Hoogstra has been conducting research with physicians at Michigan State University College of Human Medicine—researching the very same mutation that is driving Lacey’s tumor.
“With Dr. Hoogstra’s research expertise and interest in precision medicine, I knew I wanted him to be involved with treating Lacey,” Dr. Close said.
The good news: There are drugs specifically designed to target the DNA changes in these cancer cells, Dr. Hoogstra said.
And with this specific cancer, oral chemotherapy medicine can specifically target the mutation.
“Historically, tumors like Lacey’s were treated with radical surgery and conventional chemotherapy,” Dr. Hoogstra said. “With new advancements in precision medicine, oral chemotherapy medication is now available for treatment. And Lacey would need to take just two pills each day.”
Lacey underwent scans in December 2021, when she began the medicine. At that time, the tumor measured about 353 cubic centimeters—about the size of a softball.
In February 2022, her care team ordered additional scans to determine if the tumor had shrunk.
The size of the tumor, after just two months of treatment, was 48 cubic centimeters.
“We’re not totally sure as to what is next,” Alicia said. “But it’s clear this treatment is working.”
In June, Lacey’s tumor was down to 19 cubic centimeters—about the size of a pingpong ball.
She continues to take the medication daily and she’ll soon undergo another round of scans to see if the tumor has gotten smaller.
She and her family make regular trips to Grand Rapids to visit the children’s hospital for checkups and scans.
“The hope is that it will go away completely,” Alicia said. “But if they do need to do surgery, they want to get the tumor as small as possible.”
Alicia said she knows everyone has seen how chemotherapy can be hard on people, especially on kids.
“It’s not lost on us that she takes this pill every day and it’s basically like a vitamin … no side effects,” she said. “Other than just knowing it’s there, treatment has been pretty normal for her.”
‘Small but mighty’
These days, Lacey is busy playing softball with her friends and enjoying the warm weather in northern Michigan.
At a recent outing, she showcased her skills.
“I hit it on the first try,” she exclaimed, hitting the ball and making it on base in record time.
Asked if she scores a run at every game, she replied, “Eh, pretty much.”
“One thing is for sure: She is small but mighty,” Alicia said. “She may be one of the smaller players on the team, but she sure runs fast and can throw the ball a long distance.”
Dr. Hoogstra said the medicine is working wonderfully.
“The hope is that she stays on this medicine and, ideally, the tumor will go away completely,” he said.
He was quick to laud the contributions of precision medicine.
“The tumor is just melting away,” Dr. Hoogstra said. “This is the hope and promise of precision oncology. We hope to be able to do this for all our patients someday.”
The magic combination: understanding the genetic changes of a specific cancer, and then having access to a drug to target it, he said.
“We are learning more about genetic changes of cancer each and every day,” Dr. Hoogstra said. “And the responses we have seen to precision therapy are just amazing. It’s an exciting and hopeful time to be a pediatric oncologist.”