Eyes wide open: Cancer fight changed family’s view
By Janie Magruder
Special to GCU News Bureau
When Lily Gray was diagnosed with cancer the day before Thanksgiving in 2016, her parents, John and Lindsey, took a “Dragnet”-like approach to processing the news.
John’s focus immediately went to what they needed to do to heal their then 2-year-old daughter, while Lindsey zeroed in on researching everything there was to be known about Acute Lymphoblastic Leukemia, its treatments, side effects, survivorship and cure rates.
It was “just the facts” the two Phoenix attorneys sought from Lily’s medical team at Phoenix Children’s Hospital (PCH) as she began a 2½-year course of treatment involving doctor’s visits, pokes and prods, losing much of her hair, an often sick tummy and strong chemotherapy drugs.
“We wanted all the information, good or bad. We felt more comfortable knowing everything,” John said.
They didn’t hide much from their tiny daughter. “Lily understands that she has leukemia, that her blood is sick, that she has to go to the hospital and take her medicine and wear her masks,” he said. “The main thing she doesn’t understand is that what she has is life threatening.”
Lily to shine at March cancer run
Lily was chosen by Grand Canyon University as the honorary race starter for the 2018 Run to Fight Children’s Cancer, scheduled for Saturday, March 10, on GCU’s campus. The popular event, featuring 10K and 5K runs and the emotional Cancer Survivors Walk, is the largest race in Arizona dedicated solely to pediatric cancer.
Now in its eighth year, the run is presented by Children’s Cancer Network (CCN), hosted by GCU and sponsored by Pono Construction and iHeart Radio. All proceeds go to CCN and PCH.
This isn’t the first Run to Fight for Lily, who at 3 is the event’s youngest race starter, and her family. Last year, just three months into her treatment, John and Lindsey formed Team Lily Panda, a fundraising squad of family, including baby sister Lincoln and friends. Lily Panda – she got that nickname from her aunt – plans to be back in fine form in March.
“We’re in a different place this year because we’re not just about being sure Lily is doing well, but we also want to help educate the community and make sure people know what childhood cancers are and how underfunded they are,” Lindsey said.
According to the National Cancer Institute, an estimated 15,270 adolescents and children ages 19 and younger were diagnosed with cancer in 2017. An estimated 1,790 of those died from the disease, the NCI reported.
The most common types of cancer diagnosed in children ages 14 and younger in the United States are leukemias, followed by brain and other central nervous system tumors, lymphomas, soft tissue sarcomas, neuroblastoma and kidney tumors.
Federal funding for childhood cancer research primarily is allocated through the NCI. However, just 4 percent of its annual budget goes to childhood cancers, the most common of which is Lily’s.
The theme of this year’s event is “Stepping up the Fight,” reflecting a desire to go well beyond the $500,000-plus that has been raised by participants and sponsors in the seven previous runs, said Debbie Accomazzo, GCU’s Community Outreach Manager.
“Much has been accomplished since 2011, but we’re not done yet,” Accomazzo said. “With Children’s Cancer Network at the helm, Run to Fight Children’s Cancer will vastly expand its reach, right along with the funds raised.
“GCU is excited to welcome Lily to the Run to Fight family and though she may be small, she’s a fighter and her parents intend to declare victory not just for Lily, but for all the young superheroes who face a cancer diagnosis.”
A healthy child becomes sick
Before her diagnosis, Lily was a healthy child who never came down with much more than a common cold. Leading to her diagnosis, she didn’t have the bruising or bleeding that children often exhibit when leukemia is present.
But in November 2016, Lily’s teacher mentioned she was falling asleep at school. The Grays decided to have Lily tested for celiac disease because she was grappling with digestive issues, and when her blood work came back abnormal, the couple was told to bring her straight to PCH’s emergency department. Lindsey, whose mother died from leukemia in 2007, soon learned Lily had blood cancer, too.
Her treatment began immediately, and the Grays went into investigator mode, Lindsey researching and writing down dozens of questions and John posing them to the medical team.
“We said, ‘We’re going to be calm and collected whenever things happen to her – we’re not going to get excited or upset or cry in front of her,” Lindsey said. “There’s so little we could do as parents, but we could create that serene environment for her.”
Of course, there were many times when fear and emotions grabbed Lindsey, who credits her support network with helping her weather the storms. “I relied on friends to be vulnerable around,” she said. “I’d say, ‘I’m scared about this,’ and they would remind me that God doesn’t create fear, that that’s the devil trying to make you feel like you can’t do this.”
Vast support network
The family’s first introduction to Children’s Cancer Network, an Arizona nonprofit providing myriad support services for children and families affected by pediatric cancer, was the admission bag Lily received at PCH. The backpack contains a journal, toothbrush and toothpaste, age-appropriate activities, resource lists and a gas card.
Unlike so many families that CCN helps with gas and food cards, basic necessities, furniture and more, the Grays had the means to care for Lily. But they leaned heavily on their family, friends and community at Citizens Church, which brought meals and crafts and offered support and prayers.
The Grays can’t say enough about the medical care and teaching tools they’ve received from PCH.
For example, Lily brought home a stuffed giraffe, Dr. Goose, who has a medicine port in his body. When Dr. Goose gets his “medicine” from two bags strung on a pink IV pole, Lily soothes and assures him it’s not going to hurt and that he is going to get better.
The Grays also play tea party when it’s time for Lily’s pills, grinding up the medication and stirring it into her juice, then toasting with their own beverages.
In addition to being strategic and analytical about their daughter’s illness, John and Lindsey already are helping others. They formed a fundraising team for the Arizona chapter of the Leukemia & Lymphoma Society’s “Light the Night” event last fall, and John recently organized an event for PCH that raised more than $30,000.
They also are filling smaller gaps by providing unmet needs at the hospital, such as a Facebook “panty drive” for the tiny patients and funding age-appropriate activities for the older ones.
“Being in the mode of ‘I’m a cancer Mom’ is not a healthy place for me,” Lindsey said. “My purpose is in being someone who can stand alongside someone who can’t do it all by themselves. Because it really is hard.”
Lily, whose favorite stuffed animals are Cookie Monster and Minnie Mouse, has weathered her treatment well. Even though she missed nearly a year of school and desperately missed playing outside during that time, she is on track to enter a pre-kindergarten class next fall at the ripe old age of 4.
But first, her debut as race starter will put her on a big stage surrounded by an estimated 2,500 runners, walkers, supporters and volunteers.
Run to Fight put CCN on the map in terms of name recognition, said Patti Luttrell, its co-founder and executive director and a former faculty member in GCU’s College of Nursing and Health Care Professions. Patti and her husband, Steve, started CCN after their son, Jeff, was diagnosed with leukemia almost 25 years ago. Now almost 30, Jeff, a graphic artist, designed the medals for the 2018 Run to Fight.
Proceeds from the run also have helped fund CCN’s various programs, contribute to childhood cancer research and hire a family therapist in PCH’s Center for Cancer & Blood Disorders.
“The run is one of the better things that’s happened to us,” Steve said.
ABOUT THE RACE
What: Eighth annual Children’s Cancer Network’s Run to Fight Children’s Cancer, hosted by Grand Canyon University
When: Saturday, March 10. Starting times — 7 a.m. for 10K, 7:45 a.m. for 5K, 9 a.m. for Cancer Survivors Walk
Where: Grand Canyon University, 3300 W. Camelback Road, Phoenix
Cost: $25 for 5K and $35 for 10K through Jan. 31, $30/$40 through Feb. 28 and $35/$45 through March 10. Cancer Survivors Walk registration is free and open to cancer survivors of all ages.
Benefit: All proceeds are spent locally by Phoenix Children’s Hospital and Children’s Cancer Network.
Volunteer: Enthusiastic, responsible volunteers for events leading up to race day and on race day are needed. Jobs include sign-making, packet-stuffing, cheerleaders for our runners and cancer-survivor families and more. Contact Brenda Vanderbur at 602-451-0211 or Brenda.Vanderbur@childrenscancernetwork.org.
More info: Patti Luttrell, 480-398-1564 or firstname.lastname@example.org