Race starter braves the elements of cancer fight

Story by Janie Magruder
Photos by Darryl Webb
GCU News Bureau

Emma Kerr is the picture of true grit. Not the boot-wearin’, horse-ridin’, gun-totin’ kind you see in old Westerns, but the quiet brand of courage and determination that has a large community of family and friends, including a Grammy-winning artist, rootin’ as she fights for her life.

Emma was diagnosed 14 months ago with leukemia, and it’s been a rough road.

The 11-year-old Phoenix girl missed 81 days of fifth grade last year for cancer treatments and resulting infections. Last Thursday, she was released from Phoenix Children’s Hospital (PCH) after spending 55 days there, including 11 days in intensive care when a persistent fever spiked to almost 105 degrees. Besides pneumonia, Emma also had contracted Valley fever, which had settled in her shoulder, hips and knees and required surgery to remove an abscess and fix the fever.

But make no mistake — even if she has to ride in a wheelchair, this honorary race starter for the sixth annual GCU Foundation Run to Fight Children’s Cancer has every intention of blowing the horn for thousands of participants at the starting line in the 10K and 5K events. The run is scheduled for Saturday, March 12, on and around the University’s Phoenix campus. Click here for details and to take advantage of early bird registration fees through Sunday.

Because of her prolonged bed rest, Emma lost all muscle tone in her legs and currently is in physical therapy to learn to walk again. The sixth grader once again has missed a lot of school.

“It’s going to be a big party,” said Emma’s mom, Ildi Kerr, who plans to attend with Emma’s dad, James, and Emma’s younger sister, Abby. “We’re looking forward to getting our team together, Team Emma, and seeing our friends, plus the other race starters who make up ‘The Super Six.’”

She is referring to the previous race starters, Olivia Baumgardner (2011), Grace Kostyk (2012), Cooper Gokee (2013), Jack Welch (2014) and Mia Bryant (2015), who represented the first five runs well. The events have raised nearly $400,000 for PCH and its research into promising diagnostic tools and cancer treatments and for Children’s Cancer Network (CCN), an Arizona nonprofit that serves and supports children with cancer and their families. It also raises awareness of pediatric cancer, the leading cause of death by disease among children ages 14 and younger.

A surprisingly small world

Before her diagnosis on Nov. 12, 2014, Emma, a dedicated dance student, started complaining about muscle aches, joint pain, headaches and fatigue. The symptoms expanded into stomach aches, then nausea and vomiting. Her parents thought she had the flu, but medications didn’t help. After several visits to Emma’s pediatrician, her parents took her to PCH, where she was diagnosed with Acute Lymphoblastic Leukemia (ALL), cancer of the blood and bone marrow and the most common childhood cancer.

Emma began treatments within days, and almost as quickly, the Kerrs began to learn about people who could help with everything from their fears to their finances. Some of them the family already knew.

“We had this network of people we already were connected to and we didn’t know they had any connection to childhood cancer,” said Ildi, referring most notably to the fact that Olivia attended her daughters’ elementary school. “It’s a little unnerving how many kids are impacted in the Valley and the state. And how many are just like your family.”

Emma responded well to her treatment, and by the summer the family was making plans to hold a benefit concert for CCN in their backyard featuring Chris Trapper, a Grammy-winning musician whose music the Kerrs love. They met at one of his Phoenix area concerts and became friends.

In July, Trapper said he would be available to perform at their house on Nov. 11, nearly a year to the day after Emma’s diagnosis.

In celebration of her first year of treatments being completed, Emma got busy designing and selling T-shirts, which raised $1,700. Another $2,500 was contributed by concerts guests and Trapper himself, and all of it went to CCN.

“It was one of the most special things our family and friends who have been on this journey with us for the past year got to celebrate with us,” Ildi said. “They’d seen a lot of the lows from Emma’s treatments and the scary times of not knowing what was happening, so it was nice to have everyone there for something happy.”

Before his performance, Trapper confided that he’d lost both of his parents and a close friend to cancer. As a father of two young children, he felt drawn to do something.

“You feel devastated when you see a child so vulnerable and so difficult to protect,” he said.

Before Trapper performed, Ildi said a few teary words about Patti Luttrell, CCN’s executive director, and the support CCN had given her family. “Patti was one of the first people I spoke to this time last year when we were sitting in the ER waiting to find out Emma had leukemia, and it was such an amazing way to get to know someone who is 100 percent dedicated to fighting childhood cancer.”

The origins of CCN

Luttrell and her husband, Steve, have been fighting it for 22 years. Their son, Jeff, was diagnosed with leukemia at age 5. Jeff has had numerous rounds of chemotherapy and radiation as well as a bone marrow transplant to treat his cancer and recurrences of it. Now 27, he has experienced several occurrences of a secondary cancer that he has fought with additional radiation and surgeries, most recently in May 2015. Never one to quit, Jeff earned a B.A. in Graphic Design and Illustration from The Art Institute of Phoenix in December.

When Jeff was diagnosed, almost no educational services and resources were available to Arizona children battling cancer and their families. The Luttrells, with their daughter, Jenny, changed that by creating CCN.

In 2015, the nonprofit distributed gas and food gift cards valued at $70,000 to families, and in May it awarded $32,500 in college scholarships to survivors of childhood cancer, their siblings or their parents. More than 125 scholarships have been awarded by CCN since 2005.

And because childhood cancer wreaks financial havoc on many families, CCN also adopted more than 100 families in 2015, at Christmastime and back-to-school time, and handed out 150 backpacks to children hospitalized for cancer. The backpacks are filled with blankets, teddy bears, journals, gas cards and helpful resources.

Recently, CCN has helped fund a book for siblings to help them understand and deal with cancer, which comes out in April. CCN also received a $30,000 grant from Fiesta Bowl Charities to design and implement a program in Arizona schools that will educate children and teachers about pediatric cancer.

Ildi, who is vice president of the Arizona Charter Schools Association, plans to help create the curricula and communicate the message.

“We want to help them understand what their peers are going through, realize they can make a difference with these kiddos with just simple acts of kindness and support and encourage them to get involved,” Luttrell said.

All of the money raised at the Run to Fight Children's Cancer stays in Arizona to help children and families in state. In addition to CCN, research on more personalized ways to diagnose and treat children with cancer are being funded at PCH. It's Center for Cancer and Blood Disorders is the largest pediatric program of its kind in Arizona, and young patients there have their own teams of medical professionals, from physicians to nutritionists, who provide care throughout the treatment and healing process.

Emma’s maturity, resolve in her fight

Emma was chosen as the race starter for her own unique qualities and those of her family, said Luttrell, a former faculty member in the GCU’s College of Nursing and Health Care Professions. Emma is older than the other race starters and has a lot of confidence and creativity, as shown by her T-shirt campaign. Her family has demonstrated “unwavering positivity” and resilience during their cancer journey, Luttrell said.

“This family has faced many challenges, as all do, and they have approached it by pulling together with a steadfast belief that they can do this together,” she said.

That was demonstrated when the Kerrs, after deciding they wanted a family member to be by Emma’s side at all times while she was hospitalized, called in the troops, all through the Christmas season and well past New Year’s.

“Not everyone has the luxury of having a parent or someone in their room all the time,” Ildi said. “We are blessed that we can have someone here, and we try to help out as much as we can with Emma’s care so that the nursing staff has more time to be with other kids.”

Until Jan. 5, when the hospital instituted respiratory safeguards, meaning visitors ages 12 and under were not allowed on patient floors, Abby, 9, was a regular guest in Emma’s room. They would play video games together or hang out watching TV. On Christmas morning, they opened presents together.

“The hardest part for Abby with her sister being gone is that my husband and I are never in the same place at the same time,” Ildi said. “And she’s a mama’s girl.”

And yet the family has kept certain traditions going, such as bacon and hot cocoa for breakfast occasionally and bike riding through the neighborhood. And now that Emma is home, she’s back in her own bed and the family can have dinner together, a small thing that shouldn’t be overlooked.

Emma’s treatments are expected to be finished in 2017, and between now and then Ildi Kerr vowed there will be nothing but positive energy surrounding her firstborn.

“I believe what you put out comes back to you,” she said. “I’d rather put our good vibes, positive thoughts and hope that’s what comes back in return. We know Emma’s going to beat this cancer. We know there are some struggles ahead and it’s not going to be an easy journey, but we need to be strong and fight hard. She’s done that every single day. How can we not?”

Contact Janie Magruder at (602) 639-8018 or [email protected].