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Arizona Nonprofits: Children's Cancer Network

Written by Marilyn Hawkes Category: Culture Issue: October 2018
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Steve and Patti Luttrell started the Children’s Cancer Network in 2004 after their 5-year-old son, Jeff, was diagnosed with cancer. Read on to find out what they have accomplished since then and how they help other Arizona families faced with pediatric cancer.

Q: Why did you start Children’s Cancer Network?Steve and Patti 20185b15d
A: When our 5-year-old son was diagnosed with cancer, we were devastated. There are no words to describe the horror of hearing those words. However, it wasn’t long before we realized that we had it good – at least compared to other families facing a similar nightmarish journey. My husband and I both had jobs. We had good health insurance. We had a large circle of family and friends who carried us on our worst days. My daughter, Jenny, then a teenager, was profoundly affected by the difficulties other families faced. She was the one who put a stake in the ground and said, “We’re going to make a difference.” With Jenny leading the way, we made it our mission to support those families.

Q: What does the organization do and why is its work so important?
A: The “C” word is terrifying. With children, it’s even more so. We work with families from the moment of diagnosis, throughout their cancer journey, and into survivorship, providing whatever support they need along the way. For some families, this means gas and grocery gift cards to offset the high cost of caring for a child with cancer. For others, it’s activities for young cancer fighters who feel isolated and alone, programs to help siblings cope with cancer, opportunities for parents to connect with others who are waging a similar fight, and college scholarships to help cancer fighters look toward the future. At the end of the day, we work to ensure that no one has to go it alone.

Q: Who does your organization serve?
A: We serve families across Arizona facing pediatric cancer. It’s hard to imagine, but this includes babies who have been diagnosed with a brain tumor, kindergarteners with acute lymphocytic leukemia and high school athletes who have lost an arm or leg to osteosarcoma. We serve the parents who are facing overwhelming stress and fear, trying to hold down jobs and keep their families intact while caring for children who are fighting a deadly disease. We help the siblings – often the silent victims of childhood cancer – figure out how to navigate the “new normal.” We’re also there when young adults transition into adult health care – an entirely different world from pediatrics – and help them learn to advocate for themselves.

Q: Tell me about some of the goals you’ve been able to accomplish.
A: Children’s Cancer Network works tirelessly to ensure that our programs meet the needs of Arizona families. Our goal is to provide support throughout their cancer journey – with all of its twists and turns. This goal is realized in a number of ways. For example, pediatric cancer can be financially devastating, so a big part of our work helps families defray the non-medical costs of cancer. We provide $75,000 each year in gas and food cards to mitigate the cost of frequent travel to and from the hospital for treatment, and to ensure families can put food on the table.
We are also proud to fund a mental health therapist for childhood cancer families at Phoenix Children’s Hospital. When we learned of the need for therapy among families dealing with the emotional, physical and financial stress of cancer, we made it our goal to help. Today, the therapist provides mental health care at no cost to the families, and they report that it’s making a huge difference.
Another program we introduced two years ago – Honoring Our Peers Everyday, or H.O.P.E. – gives school kids the tools they need to show compassion and be a friend to peers fighting cancer. This makes it easier for children with cancer to transition back into the classroom. We have delivered the H.O.P.E. curriculum to more than 3,000 children across the state, and the program has received rave reviews from educators, students and their parents.

Q: What are the organization’s greatest needs and what are some of the challenges you face?
A: We always need more funding. We are judicious in our spending – more than 85 percent of the money we receive directly benefits the families we serve – but the need is great. While we’re proud of the programs we have developed and know they’re making a difference, there’s always more to do. We are also challenged to increase awareness and drive action. Pediatric cancer is the No. 1 cause of death by disease in children, yet it’s the most underfunded category of all cancer research. Very few new treatments have been developed in decades. Treatments that are commonly used – chemotherapy, radiation and the like – are highly toxic with late effects (including secondary cancers) that affect two-thirds of all children. This must stop. To put an end to childhood cancer, everyone must join the fight.

Q: How does it make you feel to know you’re helping children and families during their cancer journeys?
A: This work is humbling and inspiring, always. I am so touched by the strength and resilience of the families we serve. I’m also so inspired by the commitment of our volunteers, employees and members of the community who are eager to help in whatever way possible. They represent the very best of humanity. Cancer is awful, but there’s something special about bringing a smile to a child’s face, or providing a cup of coffee and a kind ear to a mom who’s just trying to hold on. There’s nothing like the experience of making a difference in that moment.

Q: Can you tell me about a particular situation that stands out in terms of helping a child?
A: It’s tough to narrow it down to one, but there is one experience that really stands out for me. I met a dad who was raising a house full of kids all by himself. Shortly after his daughter was diagnosed with cancer, he lost his job – caring for his children simply took too much time and attention. Soon after, he lost his home, and the family’s troubles got worse as they shuffled from one friend’s house to the next. He was trying desperately to keep his family afloat while keeping up with his daughter’s arduous cancer treatments.
Thankfully, the hospital helped to secure new housing for this family just in time for the holidays. CCN provided furniture, bedding, dishes, cleaning supplies and other basics for the home – along with a holiday tree and gifts for the kids. This dad’s gratitude meant the world to me and to everyone at CCN. He was especially grateful for gas cards that helped him take his daughter to and from treatment. Even in the darkest of times, he never lost sight of his children’s needs.

Q: How can volunteers become involved with Children’s Cancer Network?
A: Our volunteers are the heart of our organization. There’s always room for more! They can visit us at childrenscancernetwork.org or call 480-398-1564 to learn more about volunteer opportunities at CCN.