When the parents of a 5-year-old girl currently in treatment for acute lymphoblastic leukemia readied their daughter for kindergarten at Bright Beginnings School in Chandler, they were understandably concerned how she would be perceived and received by her peers.
The family’s trepidation troubled their second-grade daughter, Paige, and they wondered how she, too, would handle questions about her sibling’s cancer.
Enter H.O.P.E. – an interactive school program developed by the Children’s Cancer Network, a nonprofit based in Chandler and founded in 2005 by Jeff and Patti Luttrell whose son, now 29, was diagnosed in 1993 with acute lymphoblastic leukemia (ALL).
He was 5 when he was initially diagnosed. Growing up, he overcame other bouts of various cancers until age 25.
More than two decades after the first diagnosis, Patti Luttrell’s voice breaks when she speaks of the experience, one that enables her empathy and concern for cancer patients, their siblings and their parents all the more authentic.
“As you can imagine, when you first hear those words, ‘Your child has cancer,’ your whole world turns upside down,” she said.
Helping schoolchildren better understand what cancer is, and is not, is the goal of the H.O.P.E. (Honoring Our Peers Everyday) program.
“Cancer is a scary word, and when you throw in childhood cancer, its even scarier,” said Sharon Wozny, program specialist at Children’s Cancer Network who oversees the in-school programs that since June 2016 have reached more than 3,100 schoolchildren statewide.
The 55-minute age-appropriate interactive program, which includes two specially created videos, was presented at both kindergarten and second-grade classrooms this year at Bright Beginnings because the parents of the leukemia patient heard about it from their interaction with Children’s Cancer Network.
“With Gwen returning to school after a year off due to intense treatment, I wanted to present something to help ease the transition back for everyone,” said the mother, adding:
“I was concerned about how Gwen’s peers would perceive her and treat her. I didn’t want her to be bullied or anxious about coming back with little or no hair or having other side effects from ongoing chemo. I didn’t want the other kids to be afraid to play with her.”
She said she also wanted the students to realize the importance of personal hygiene “and keeping germs at bay.”
“So, I worked with the school, and they agreed to have the H.O.P.E. presentation,” she said.
The two videos and PowerPoint sessions delivered between the showings help educate children and remind them their cancer patient peers are just kids like themselves – only going through some trying times that sometimes require particular cautions.
Gwen’s mother, who requested thier surname not be used, commented that the first, cartoon-like video was especially relevant to the children and “didn’t focus on the negatives.”
“H.O.P.E. was presented to the Kindergarten and second-grade classes. I attended both sessions, and while they were similar, each was tailored specifically for the appropriate age level,” she said.
“I was really pleased with the program, and have heard back from parents that they appreciated it, too,” she added. “They learned you can’t catch cancer, and that the returning child is still themselves, even if they look a little different, tire easily or have shorter hair.”
There are two videos used by H.O.P.E. for all ages: the animated one, and another profiling three pediatric cancer survivors, ages 8, 12 and 18 years, who candidly speak about their experiences transitioning back to school.
“The first video is a quick draw teaching the facts of cancer in a way that is fun and easy to understand,” said said Wozny, who retired in 2013 after 30 years experience at Mesa Public School’s Taft Elementary.
The children in the second video express why they find cancer “the worst,” including being too tired to play or hang out with friends, how a simple cold – something others take in stride – can put them back in the hospital.
It also teaches how children endure the teasing or stares when their hair is gone or their faces are puffed up by medication.
“Their mantra is ‘I’m still me! Don’t forget about me! I still want to do what I used to!’” said Wozny. “I find all these children to be amazing. They’re warriors. They battle every day.”
Following her retirement, Wozny began volunteering with Children’s Cancer Network and the American Cancer society until she was hired part-time as a CCN program specialist.
The skills developed in her three decades of teaching now infuse her work as she presents the in-school programs.
“The H.O.P.E program has three components – education, compassion and action,” said Wozny, who was one of the creators of the H.O.P.E. program, which received a grant from Fiesta Bowl Charities.
“This program is there to help cancer survivors and their siblings as they transition back to school. It teaches facts, and helps dispel myths,” Wozny said, adding:
“Some children may worry its contagious. Others may have questions of their classmates like, ‘Why is your face so fat?’ after treatments, or ‘Is your cancer gone?’ or ‘Will your hair grow back?’. These are what we address in our classroom and school assembly talks and in our videos. Underlying it all are messages of empathy, kindness and compassion.”
After working with CCN for three years, Wozny penned a book that helps siblings manage the range of emotions they may experience during the cancer experience.
“Jamie’s Journey: Cancer from the Voice of a Sibling” follows 13-year-old Jamie after the diagnosis of cancer in her 10-year-old sister.
It also addresses the confusion, worry and jealousy of the time parents spend with a stricken sibling.
Information on the book, and the author, can be found at SiblingCancerBook.com.
For more information on the H.O.P.E. program, or to schedule a school visit, contact Wozny at 480-398-1564 or 480-703-6204. She can also be reached at Sharon.Wozny@childrenscancernetwork.org.