Genetic Testing Helps Kansas Family Fighting Cancer
Meet Parker
A mom’s heart knows ... when your normally sassy and energetic 5-year-old daughter becomes withdrawn and miserable, something’s not right. In February of 2023, parents Chris and Kayla took their daughter Parker to their regional hospital in Salina, Kan., where her care team discovered a large mass in her belly.
“You’re going straight to Children’s Mercy,” their doctor said. For Parker, it was a great adventure because she got to ride in a helicopter to the Children’s Mercy Adele Hall campus in downtown Kansas City. But for her parents, it was the beginning of a year-long treatment process full of ups and downs.
Parker has a type of cancer called rhabdomyosarcoma. The first step of her treatment was surgery to remove the mass in her abdomen, followed by radiation. “We are so grateful to have all her testing, treatment, everything at Children’s Mercy,” Kayla shared. During one month-long inpatient stay, “Parker was spoiled by all the attention she got,” Kayla recalled. “She knew the hospital schedule inside and out –bingo, crafts, games – she loved it there. It was hard to entertain her once we got back home!”
Genetic testing gives insight
Shortly after Parker’s surgery, her care team approached Chris and Kayla to see if they would be willing to do genetic testing on all three of them. Testing could help them better understand the type of cancer Parker had as well as contribute to ongoing research. They agreed without hesitation. “If it could help another little kid, why not?” Kayla shared.
Children’s Mercy doctor Midhat Farooqi, MD, PhD, is director of the Molecular Oncology program and has high hopes for the impact genetic testing can have on the future of cancer treatment for kids like Parker. These tests can allow for targeted treatment, Dr. Farooqi shared, which may be more effective at addressing each child’s particular type of cancer.
Genetic testing came back positive for the DICER1 mutation in both Parker and her father, Chris, while Kayla was negative. People with the DICER1 mutation are more likely to develop tumors, both cancerous and non-cancerous, during their lifetime. While there is no treatment for the mutation, once someone knows they have it, they can monitor more closely for early signs of tumors.
Their family’s testing was especially timely because Kayla was pregnant with Payton, Parker’s little sister, when Parker was diagnosed. “We tested Payton within a couple weeks of birth to stay on top of it,” Kayla shared. “We thought, why wouldn’t we try to catch this early on, because it could help us avoid Payton having to go through what Parker’s going through all over again.”
Close monitoring
Thankfully, baby Payton’s test was negative for the mutation, but now the family is armed with information that helps them proactively care for their family’s health. They will all get regular screenings, and Parker and dad Chris will be monitored very closely for any changes in their health. “We used to be the type of people who were like, ‘Oh, it’s just a cold,’ but now it’s like, ‘No, we’re going to check everything out,’ and that makes a huge difference for our family,” said Kayla. Parker will get regular eye exams, abdominal X-rays, thyroid testing and other screenings for the rest of her life. Careful cancer surveillance can help Parker's family catch any possible tumor growth early — and respond quickly.
A caring community
Even though Children’s Mercy is a three-hour drive from their home in Minneapolis, Kan., the family makes the trip for all of Parker’s treatments. “She knows the nurses and the doctors there, and she wants to be a nurse when she grows up,” Kayla shared. “They made her a little badge, and now she tells me she’s going to be a nurse at Children’s Mercy, and I’m like, ‘Have at it, kid!’”
Chris and Kayla’s community has stepped in to help out during Parker’s treatment. Several sets of grandparents and great-grandparents helped with childcare for both girls since Parker wasn't able to go to preschool during her chemo. In an emotional celebration just over a year from Parker’s diagnosis, her entire family gathered to watch her ring the bell signaling the end of her chemo treatments. It was a day filled with both tears and cheers from everyone who has walked with Parker and her family through her cancer journey.
For other families facing medical challenges, Kayla said, “Just take all the support you can get from Children’s Mercy. They are there to help you and they see this every day. You may feel like you’re totally alone or like you don’t know how you’re going to get through it, but they are there every step of the way.”