From the time she was little, Pheonix Spangler was an active, vibrant child with a passion for giving back to her community. Pheonix had an amazing compassion for others, with a “let’s help them” attitude. “Pheonix volunteered at food pantries, homeless shelters, adopt-a-family programs and nursing homes. She believed that all humans are responsible for one another and if you can help, you should help” recalls her mother, Stephanie. Pheonix was a dedicated student with the goal of joining the air force and serving her country after high school.
Her world changed in 2012, at the young age of 12, when Pheonix was diagnosed with stage IV rhabdomyosarcoma, a soft tissue cancer. The diagnosis and resulting chemotherapy and radiation treatments prevented her from living the active lifestyle she once had. Even through all the medical challenges she endured, Pheonix never let the diagnosis stop her. She excelled in school, making it into the national honor society. “She still participated in food, blanket, and toy drives with the help from her friends and family. She drew pictures for other kids at the hospital and tried to cheer up the little ones that were stuck inside, not understanding why they couldn’t go outside.” Pheonix fought through countless chemotherapy and radiation treatments, passing away on January 4th, 2015.
Prior to her passing, Pheonix was adamant she wanted to donate her body to science, so that other kids had a fighting chance against rhabdomyosarcoma. Upon researching options, Pheonix’s family came across the work that cc-TDI was doing and more specifically the option to store tissue samples via cc-TDI’s in-house biobanking registry CuRe-FAST. The donation of Pheonix’s tumor tissue allowed cc-TDI’s researchers to broaden the genomic understanding of the disease and provide a low-barrier way to share information with researchers around the world.
“Pheonix was my best friend. I met her when she moved into my neighborhood when we were young, and our friendship turned into something that changed me forever. She became my best friend who was more like my sister. We would jump on the trampoline, watch scary movies, play Call of Duty Zombies, and spend time bugging her uncle Mikey. Normal kid stuff. We had a one-of-a-kind friendship talking about anything and everything. Nothing was ever off the table with Pheonix. She would listen to everything you had to say without judgement and give you advice that made it seem like she had lived 7 lives before. Shortly after she found out she had little time left, and having not talked too much about it, I said, “hey if you’re scared or anything, you know you can always talk to me.” She looked into my eyes and said to me at 14 years old, “I’m not scared of dying, I’m scared of what I am leaving behind.” Looking back, that conversation was a turning point and is the whole reason I’m dedicated to raising awareness for childhood cancer. She was never scared of dying, she was scared knowing the pain that dying brings. There are too many children out there carrying the emotional weight of knowing their loved one’s world is about to crumble and there is nothing they can do. Children should never have to think about things like that. Adults should never have to worry if their child, niece, sibling, whomever, is not going to make it to their next birthday. If everyone was aware and fighting for this cause, that next little girl or boy may get to grow up and graduate with their friends. The pair of 14-year-old best friends doesn’t have to talk about what life will be like once one of them is gone. And one day no more children will be robbed of their lives. So please donate and spread awareness for the need of childhood cancer research. The lives of our friends and family depend on it.” – Alycia, Pheonix’s best friend and champion.
In 2015, the Pheonix Spangler Foundation (PSF) was created in honor and memory of Pheonix. PSF is committed to raising awareness and funding for the advancement of pediatric cancer research in the hopes of developing safer treatment options. “We believe that with the proper research, safer treatment options can be discovered. Through medical advances, children should not only be cured of the cancer itself, but also be able to live healthy lives without additional medical issues caused by the initial treatment.”
In June 2015, following Pheonix’s death, PSF hosted a “Party with a Purpose” in honor of Pheonix’s birthday. Moving forward PSF hosts annual celebrations in her memory as well as a Gold Ribbon Gala in September, recognizing Childhood Cancer Awareness Month. This year would have been Pheonix’s 21st birthday and to honor this milestone, PSF and their supporters (a.k.a. the Pheonix Fighters) hosted a casino night. In the last 5 years, PSF has donated nearly $100,000 to rhabdomyosarcoma research at cc-TDI. Pheonix’s Mother Stephanie describes seeing the research in person, “I was able to visit the lab a few years back and what I saw amazed me. The lab was so unassuming, and yet incredible breakthroughs are happening. I really appreciated being able to see that our donations are being put to great work. We hate the reality that there is a lack of funding, but we are happy to help in any way that we can.”
Our heartfelt thank you goes out to Stephanie Furtado, Alicia, and the Pheonix Spangler Foundation for their support of rhabdomyosarcoma research. Their help brings us closer to developing safe and effective treatment options. On behalf of the entire research team, thank you for the difference you continue to make.