Chandler girl, 12, stays strong in cancer fight The Chandler Arizonan

Chandler girl, 12, stays strong in cancer fight

October 5th, 2020 Chandler Arizona Staff
Chandler girl, 12, stays strong in cancer fight
City News
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By Katy Springer
Arizonan Contributor

It started as a lump on her knee.

Twelve-year-old Kylie Lark had taken a spill down the stairs and her parents, Jolene and Daryl, figured she had sprained something.

They did all of the right things – ice, elevation and rest – but ended up in urgent care when her leg didn’t get better. They were worried Kylie may have torn a ligament.

They never considered the possibility of pediatric cancer.

“The doctor called us at home and asked if we were sitting down,” said Jolene. “He said the x-ray showed a cancerous mass on her knee. We were absolutely blindsided. Our lives were turned upside down in that moment.”

The next morning, May 4, Kylie was admitted to Phoenix Children’s Hospital, where doctors gave a formal diagnosis: osteosarcoma, a type of bone cancer, on her knee and femur.

She would need to begin an aggressive chemotherapy treatment schedule immediately, followed by a total knee replacement and partial femur replacement.

“We were in a hospital for about a week after the diagnosis so that Kylie could get started on her chemo, but we’ve been back to the hospital many times over the course of her treatment because the medication makes her so sick,” said Jolene. 

COVID-19 added an extra layer of complication and stress.

“Patients can only have one visitor right now, which means Daryl and I are constantly taking turns,” Jolene added. “During those long days and weeks in the hospital, we see each other for about two minutes a day in the hospital lobby when we swap places. I can’t begin to explain how hard it has been.”

Kylie’s diagnosis has affected the entire family in profound ways.

Not only are Daryl and Jolene two ships in the night, but Kylie’s siblings – Jeffrey, 27, Jacob, 23, and Kayla, 13 – are also stressed as their younger sister suffers the terrible side effects of cancer treatment.

“Kayla and Kylie are especially close,” said Jolene. “We’ve driven Kayla to the hospital to wave at Kylie in her hospital room, and that does help, but Kayla has started to have nightmares about the cancer. She’s crushed by worry. We all are.”

For her part, Kylie remains positive and happy. The long-time Girl Scout and volleyball player is described as a high-achieving student, a natural-born leader and the first to befriend a new student at school.

The Hull Elementary sixth-grader earned the moniker “Smiley Kylie” at a very young age.

“She is so friendly and kind to everyone,” said Jolene. “Now we’re seeing this incredible strength in her.”

Kylie is now in month six of her 12-month treatment. She has undergone 10 sessions of chemotherapy and one surgery so far.

The next six months will bring 10 more chemo sessions and a second surgery, this time to remove unknown spots on her lungs. From there, Kylie hopes to get back on the volleyball court and back to life.

“We have learned to take things one day at a time,” said Jolene. “We’re focused on getting through one day, and then the next, and we try not to think too far into the future. I don’t think we would have made it this far without our community.”

Indeed, the Larks’ friends and family have shown steady support, from meals and gifts to a drive-by parade for Kylie when she returned home from the hospital after the initial diagnosis.

Children’s Cancer Network, a Chandler-based nonprofit organization serving pediatric cancer families across Arizona, also has stepped up to help.

“A social worker at Phoenix Children’s Hospital connected us to CCN and Patti Luttrell,” said Jolene. “From the moment we first talked to Patti on the phone, she has been such a support to our family. CCN helped Kylie get her wig after she lost her hair!”

“Our biggest priority is to ensure no family has to fight cancer alone,” said Luttrell, CCN’s founder and executive director.

“The pandemic has made things so much harder on families. Many are facing extreme financial strain, but they’re also isolated and suffering social and emotional difficulties. We’re here to help with all of it.”

CCN provides a host of services to families like the Larks, from gas cards that offset the cost of travel to and from chemo, grocery gift cards to help parents feed their families, wigs, health and wellness activities, support programs for siblings, college scholarships and numerous others.

Childhood cancer continues to be the most overshadowed and underfunded category of all cancer research, comprising just 4 percent of federal funding.

In the last 20 years, only four new drugs have been approved by the FDA to treat childhood cancer specifically.

For their part, the Larks are eager to raise funds for childhood cancer.

“The drugs for childhood cancer are so old,” said Jolene. “It’s really crazy. Medicine has come so far, but we’re still using drugs from the 1950’s and 60’s on our children.”

Added Luttrell, “Research funding is limited because the number of children diagnosed with cancer is small compared to the numbers of adult cancer patients.

“The survival rate for kids is improving, but two-thirds of them experience chronic and even life-threatening secondary effects from toxic treatments like chemotherapy and radiation. The societal impact of pediatric cancer is significant, even though the numbers are smaller.”

Children’s Cancer Network’s 10th annual Run to Fight Children’s Cancer, a virtual 5k/10k scheduled Oct. 18-25, provides an opportunity to build awareness of childhood cancer and raise money for research, treatments, patient education and support services. The race benefits CCN and Phoenix Children’s Hospital. $45. runtofightcancer.com

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