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Battles are not always waged with guns and ammunition. For Phoenix Stone, a brave hero, his battle was fought in a hospital room which he referred to as his “room home,” and involved an army of nurses and doctors he called his friends.
Phoenix Stone Keilergreen-Fest was diagnosed with stage-4 high-risk neuroblastoma when he was 17 months old. Neuroblastoma most frequently affects young children and infants, and in Phoenix’s case, was found in his bone marrow and widespread from the start. For 19 months, Phoenix bravely fought his childhood cancer and continually inspired those around him every day.
“He showed us to be brave in all situations and that's why he's our hero,” said Shiloh Keilergreen-Fest, Phoenix’s older sister, who is now seven.
From bone marrow scans to transfusions and surgeries, Phoenix remained joyful in the face of adversity, and even encouraged his parents, Heather and Ben, to “just keep happy.”
After the fight against cancer became their world, Heather Keiler-Green and Ben Fest knew they would create a foundation to give back to other families who also live in hospitals for weeks and months on end. Phoenix’s courage ultimately led the family to create the Phoenix Stone Foundation to honor Phoenix and help other children diagnosed with cancer.
Phoenix was hospitalized for a significant duration of his battle, which allowed his family to see the bountiful services that other foundations provide. Heather said there were no gaping holes in what needed to be done for children with cancer, but there were little things she knew could be improved.
“We experienced a lot of love from people ourselves that boosted our spirits when we were in the hospital and so we thought, we're not doctors, we're not researchers, so what can we do?” Ben said. “Well let's do that — let's make people feel more comfortable.”
The foundation, a 501(c)3 non-profit, brings comfort to families at two hospitals: Dell Children's Hospital in Austin, and Methodist Children's Hospital in San Antonio. The foundation’s different programs all support children and their families in unique ways. In addition to the material blessings provided by outreach programs, the foundation also raises funds to support pediatric oncology education for nurses.
A photo of Phoenix taken by the Gold Hope Foundation, which provides children with cancer a free portrait session and tells their story. Photo courtesy of the Phoenix Stone Foundation.
The first program started by the foundation, called “Lovely Day Delivery,” aims to bring joy to hospitals over the weekend by providing coffee and breakfast for families. Ben and Heather said they noticed a difference in the hospital over the weekends: hospital staff goes down in number, the playroom closes and the energy dwindles.
“Phoenix used to always look out his window in the hospital room and he'd say 'it’s a lovely day,'” Heather said, and the program aims to help families to start their day in a similar fashion.
According to Ben, the foundation initially began when the family made a delivery to the hospital on Phoenix’s birthday.
“Phoenix passed away on Aug. 10 in 2017 and his birthday is [Aug. 16,] so he was just about to turn three,” Ben said. “On his birthday we were feeling pretty shattered and wanted to do something good so we took a delivery up to the hospital of toys and goodies and it ended up being Phoenix's birthday, but it was kind of like a Lovely Day delivery.”
Since that day, the foundation has grown to include several other programs, including one that brings gifts to children and their families during the difficult bone marrow transplant procedure. Ben said that when children receive a bone marrow support bag full of presents, pajamas, and other customized gifts, their faces light up.
“These kids — it's not just Phoenix — these kids are little heroes that are fighting cancer,” Ben said. “They are inspirational and amazing.”
When asked about the best way to get involved in the foundation’s cause, Heather said she first encourages people to donate blood.
“We lost count, but I'm pretty confident in saying that Phoenix got upwards of 100 blood and platelet transfusions, and it is most definitely what kept him with us for as long as he was,” Heather said.
In addition to donating blood, individuals can follow Phoenix Stone Foundation on social media and find more information on their website.
Ben and Heather said the foundation’s story can never be encompassed in a couple of programs, just as Phoenix’s legacy can never be reduced to the creation of a foundation.
“Neither captures the essence of either, really,” Ben said.
Heather said that God, her daughter Shiloh, and the Phoenix Stone Foundation are what kept her breathing after Phoenix was gone. Now, her younger daughter, named August after Phoenix’s birth month, and Shiloh will grow up with a connection to their brother through the foundation.
“We just didn't want to turn our back…” she said. “The curtain was pulled back, and we wanted to keep fighting on.”
