In this week’s episode of The UpBeat Podcast, co-host Greg is joined by special guest host Elena, one of CoachArt’s board members (and our interviewee on podcast episode 3), as they sit down to chat with CoachArt’s marketing director, Roxanne.
Roxanne oversees all the content here on The UpBeat and typically co-hosts our weekly podcast. But this week Roxanne switches seats and shares her experience with pediatric cancer. Her daughter, Aleyna, was diagnosed with Wilms tumor at age 6.
Roxanne provides tips and advice on how to help your child navigate the social pressures encountered by children with chronic illness and tells a touching story of how a little note to a classmate’s parents led to a big gesture from new friends.
As she says in our interview, Roxanne believes that if raising a child takes a village, raising a child with a chronic condition takes a village… plus even more. In addition to CoachArt, Aleyna and her family found help from many other wonderful organizations that assist families dealing with pediatric cancer, as well as other chronic diagnoses in California and throughout the country.
The Michael Hoefflin Foundation for Children’s Cancer
Based in the Santa Clarita Valley north of Los Angeles, this non-profit has one clear goal: “to put an end to children’s cancer in all its forms.” The foundation provides assistance for affected children and their families, while also devoting resources to cancer treatment research.
Specifically, what Roxanne and her family love most about this organization is the emotional support that they offer to parents. “Through the Michael Hoefflin Foundation, I found my tribe. I met so many wonderful families that were also delt awful cards. We connected and understood each other on a much different level. When your child receives a terminal diagnosis, even trivial things like a cough or a lowgrade fever can make you paranoid. It was nice to have a safe place to share my fears with and not feel crazy,” Roxanne adds. “We also formed a personal connection with the staff members there. Lety and Anita still call us, 7 years later, asking about Aleyna and inviting us to events. We feel like we are part of their family.”
The Pablove Foundation
One of Aleyna’s favorites during her cancer struggle, The Pablove Shutterbugs program gives children and teens with cancer a creative outlet through photography in eight cities around the United States. The organization also awards grants to scientists at the forefront of pediatric cancer research.
Roxanne recalls the highlights of Pablove’s Shutterbugs: “This is an amazing mentorship program. Aleyna learned so much from the volunteer photography teachers and she even went on to participate in their summer camp, which was held at Pepperdine University in Malibu, California. She made so many wonderful friends and this program helped to develop a love for photography.”
One of the largest and most well-known children’s charities in the world, Make-A-Wish has been fulfilling children’s dreams for almost 40 years and has spread to dozens of countries all around the globe. The Make-A-Wish wish granters definitely do not disappoint. From arranging meetings with celebrities to coordinating extravagant family vacations, this organization remains a kid (and parent) favorite.
Remembering the joy that Make-A-Wish brought to her family, Roxanne shares details of Aleyna’s wish to visit Aulani Disney Resort in Oahu, Hawaii. “It could not have been a more perfect vacation. From the luau-style wish reveal to the limo ride to the airport, everything was amazing. Aleyna asked to swim with dolphins and see the North Shore of Oahu. They provided us with a rental car and we took her to the other side of the island and the joy she felt in that moment kind of erased the months of heartache we endured from treatments. She was so, so happy.”
A few other organizations that were helpful in Aleyna’s journey with cancer were Alex’s Lemonade Stand. This organization raises money for pediatric cancer research and it offered Roxanne and her family a way to give back. Jessie’s Joy Jars provides fun little surprises for kids fighting cancer, as does the Super Max & Bryce project. The Ronald McDonald House was also a wonderful resource for Roxanne and her family, by providing opportunities for family camp and resident camp in the Los Angeles area.
The UpBeat podcast is powered by CoachArt, a nonprofit organization that provides FREE art and athletic activities to families impacted by any childhood chronic illness – such as arthritis, asthma, diabetes, cancer, cerebral palsy and more. Programs are currently offered in the Los Angeles, San Diego and San Francisco Bay areas, with more cities coming soon!