Oct 2, 2019
In this podcast, Dragonfly mom, Aimee, shares what happened after they moved to Cincinnati, OH in the hope of finding a cure for her teen-aged son Ian's health issues.
After being misinformed by doctors in her former town, a Cincinnati Children's Hospital Medical Center endocrinologist diagnosed Ian with a rare form of cancer: Langerhans cell histiocytosis (LCH). This form of cancer that can damage tissue, especially the nervous system, or cause lesions to form in one or more places in the body. At the time, there was no treatment available for LCH...
Hoping to extend his life, doctors started Ian, at 17, on chemotherapy.
That’s when hospital social workers gave Aimee a "blue bag" from The Dragonfly Foundation. Aimee could not believe how much she and Ian needed items included in the bag, and how much they would appreciate being members of Dragonfly.
"The Dragonfly Foundation was a beautiful thing to happen to us in a time that was very dark," Aimee said.
Dragonfly's "second-family" approach, along with their events really brought Aimee and Ian joy. One event Ian particularly enjoyed was the Dragonfly Day on the Field at Great American Ball Park. Thanks to the support of CBTS and the Cincinnati Reds, Ian and other Dragonflies had the opportunity to play "baseball" on the same field where the Cincinnati Reds play, receive a custom Reds jersey, visit the visitors' dugout, have their name/photo on the Jumbotron and eat lunch in the Lexus Diamond Club Lounge. Ian was also able call the game over the loud speaker. This day, along with other days (including events in the Dragonfly suite), was the silver lining in the dark cloud that seemed to follow them.
Aimee shares that Dragonfly meant "love" for their family.
Aimee encourages people to donate seats and suites to The Dragonfly Foundation to give to dragonfly patients/families. Suites enable immune suppressed kids and young adults access to private restrooms. The suites also provide gathering and socializing opportunities.
Going to visit The Landing, Dragonfly's headquarters and program space also help dragonflies feel normal when they are going through pain and uncertainty.
Ian's prognosis is still not clear, but they know there are people in their lives to help them get through. She also knows Dragonfly will be there, too.
Aimee feels this is her time to volunteer and give back to Dragonfly. Both she and Ian want to do what they can to help bring smiles to other dragonfly faces by raising money, welcoming new families and helping build community among and around the Dragonfly families. Giving back is very important to Aimee since she understands how important The Dragonfly Foundation is to other families.
Aimee is reminded of The Dragonfly Foundation everyday when she is driving home from work and she sees the Lamar Advertising of Cincinnati "dragonfly" billboard. Aimee knows the organization is so much more than a "non-profit." When Aimee sees the billboard, she is reminded how blessed they are to be so close to Cincinnati Children’s Hospital and to have The Dragonfly Foundation.
The Dragonfly Foundation(R), a 501c3 nonprofit, helps pediatric cancer patients and their families find strength, courage, and joy. We do this by providing ongoing support, relevant materials, and caring, nurturing and transformative experiences.
To donate and to learn more about Dragonfly, please visit Dragonfly.org or text WINGS to 71777.
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