Patti Luttrell’s son Jeff was just 12 when he needed a bone marrow transplant.
It was the latest attempt to save his life after fighting cancer for several years.
Despite the tremendous strain the East Valley family faced, they knew the issue was bigger than them.
They wanted to help other people in their situation.
Luttrell, co-founder and executive director of the Chandler-based Children’s Cancer Network, recalled how a little girl in the hospital room next to Jeff’s died of cancer.
The girl’s family did not have money to put gas in their car for the trip home after her passing.
Jeff’s sister, Jenny, 15 at the time, said, “That’s not fair. We’re gonna make a difference.” She suggested that their family organize a fundraising fashion show where child-cancer survivors could shine as the models.
“It was her idea to get the whole thing started,” Luttrell said. “Cancer does not discriminate. It’s all ages, all ethnicities. Cancer is a life-changing event.”
The show’s success prompted the Luttrells to start the Children’s Cancer Network in 2004.
The nonprofit organization provides financial help to families affected by cancer, promotes education about cancer-related topics and offers many activities to help boost the self-esteem of child cancer patients and their siblings.
“We build programs based on what the parents say is needed,” Luttrell said. “We talk to our hospital partners. We fill the gaps. We take the middle ground.”
The organization began in the Luttrells’ home and was made up of volunteers for about the first 10 or 12 years, Luttrell said.
Now, Luttrell works for the organization full time after leaving her position as a pediatric nursing professor at Grand Canyon University.
Today, the Children’s Cancer Network has its own office, about 350 to 400 volunteers and four part-time staffers.
Children’s Cancer Network has a 13-member board of directors, of which Patti’s husband, Steve, is president as well as co-founder.
Their daughter, Jenny Lane DeAugustinis, who spearheaded the original fashion show, is also on the board. At 29, Jeff is cancer-free and a graphic designer who does illustrations for the cancer network.
The Children’s Cancer Network serves 750 families a year throughout the state and has donated about $4.5 million in programs and services to families over the last 14 years.
Just last year, the nonprofit awarded $75,000 worth of gas and food cards to families impacted by cancer.
The nonprofit organization also expanded its office space by about 2,000 square feet several months ago. The additional area includes a room painted pink (decorated by the East Valley Women’s League) where cancer survivors and their families will be able to get makeovers and wigs.
Earlier this year, a therapist at Phoenix Children’s Hospital who counsels cancer survivors and their families went from working part time to full time with funding from a grant. Families do not have to pay for the counseling.
Patti understands the importance of finding the right person to talk to when going through the trauma of a family member suffering from cancer. Her family’s experience with cancer began in 1993, when Jeff was 5 years old and in kindergarten.
Jeff had not been feeling well and a pediatrician discovered his platelets were dropping over time with no explanation for the changes. He was diagnosed with acute lymphoblastic leukemia, said Patti, who at the time was a pediatric ICU nurse at Phoenix Children’s Hospital.
“That was a really scary night,” Patti said. “So many things go through (your) mind of what will happen, just a lot of concern on many, many levels.”
Jeff endured chemotherapy and radiation, but the leukemia was “difficult to treat and it kept coming back,” she said.
Jeff was always optimistic. “He would always tell us, ‘It’s OK, we got this,’” Patti said.
He missed all of seventh grade because of his bone marrow transplant but recovered and went on to graduate from Corona del Sol High School before starting at Arizona State University.
His health seemed stable, but shortly before he turned 21, Jeff was diagnosed with squamous cell cancer of the tongue in 2009 and was treated with surgery and radiation. But the cancer returned in 2013 and he underwent many surgeries to try to remove it.
A little over a year ago, it returned, this time on the floor of his mouth. He had surgery to replace his jaw and chin. The medical officials utilized his shoulder blade to form his new jaw and chin. He has been cancer-free for 15 months, Patti said.
“It’s been a life-changing surgery for him,” she said. “He’s been cancer-free for a little over a year.”
Jeff also has earned a bachelor’s degree in graphic design from the Art Institute of Phoenix.
“He’s never given up hope throughout all of this,” Patti said. “The first thing he said to us is, ‘There has to be hope.’ He’s playing golf. We’re traveling. He still has good days and bad days.”
Like his other family members, Jeff uses his trials to help others. Though he likes to stay behind the scenes, he encourages cancer survivors and their families.
“He’s a very quiet guy, optimistic,” Patti said. “Life is good and he’s grateful for all that he has. I’ve seen him reach out to other family members and try to provide that help.”
Like Jeff, Patti keeps an optimistic outlook, saying she loves to help other people going through scary times as their family members deal with cancer. She said she has a “passion for taking a world that is not fair and working together.”
Brenda Vanderbur of Chandler, a volunteer for the Children’s Cancer Network, understands how unfair life can be. Her son, Ridge, died three years ago at age 18 while he a student at Corona del Sol.
He had suffered from leukemia and died of heart failure caused by a complication due to more than eight months of treatment for the cancer.
Brenda said she and her family have “an amazing support system” in the Children’s Cancer Network.
“I want to make a difference because I know what it’s like,” she said. “It’s a hard road and I see these families and I get it. Here we are, still part of the family. We’re still part of the CCN.”
Gretchen Baumgardner of Phoenix also said the Children’s Cancer Network has been a tremendous source of support for her and her family. Her daughter, Olivia, who is now 10, was diagnosed with acute lymphoblastic leukemia when she was 3 years old.
“Patti’s just amazing,” Baumgardner said. “She does so much. It’s great sometimes to get out of your own bubble, not to think about your own stuff.”
“She has created that world where we can focus on a lot of good,” Baumgardner added. “She’s just one of the most positive people and just a ray of light. She’s very selfless, almost to a fault. They’re just a wonderful, wonderful family.”