3 minute read
Tragic Journey Leads to Path for Helping Others
Written by Betsy O'Leary
Photos by Riyen Helg
Back in June of 2021, life was good for Hayley Dickens and her husband, Justin. Hayley worked as a nurse at North Oaks Medical Center, and Justin was the logistics coordinator/ warehouse manager for Gnarly Barley Brewing. After years of infertility, they had two daughters, Kallie, 3, and Kora, 1.
When Kallie first fell ill with the sniffles and fatigue, the parents figured she had picked up a bug. When she got sick to her stomach, that reinforced their belief. When her condition worsened, they hustled her to North Oaks Medical Center.
Kallie was transferred to Children’s Hospital in New Orleans and diagnosed with Grade 4 Diffuse Midline Glioma one of a group of mainly pediatric cancers known collectively as “DIPG/DMG.” From the beginning, the news was grim. Kallie’s surgeon excised a “large part” of the malignancy, but deep tendrils grew aggressively in vital brain tissue.
To buy more time with Kallie, the Dickens tried 33 rounds of radiation interspersed with oral chemotherapy approved only for adults diagnosed with glioma. There is currently no approved pediatric treatment for the approximately 300-400 children diagnosed annually in the USA
Kallie lived 10 months post-diagnosis. Six of those were mostly highquality days. After Christmas 2021, she suffered a decline even while receiving three bi-weekly chemotherapies.
Justin described that time as living “in denial waiting for the outlier statistic . . . you have to live there.”
Kallie Dickens passed away on May 7, 2022.
While Kallie was still in her initial 10-hour brain surgery, Justin needed an action plan. He decided to begin a non-profit, although they had to pump the brakes on that project to focus on their own family.
First Hayley, then more reluctantly Justin, began sharing their process of living with Kallie’s terminal diagnosis on Facebook. This brought them in touch with other families who were going through the same nightmare. They started a Facebook page, and their raw musings became the book, “The Optimistic Angel,” published by Bell Asteri Publishing & Enterprises, LLC.
They have been busy in these eight short months since their loss. Hayley is now a first-year teacher with the Tangipahoa Parish School System. They incorporated their 501(c)3 nonprofit, Keeping A Light For Kallie, and began reaching out to families living with childhood cancer.
In January, Gnarly Barley owners Zac and Cari Caramonta sponsored the second annual “Fight Like the Dickens” brain tumor and childhood cancer fundraiser. The brewery raised over $10,500 in one day. Because “Kalliegator” was their light, the Dickens now send out “Bright Boxes” to children and their families. Some contents include stuffed alligators wearing a pink bow, Visa gift cards for restaurant meals during hospital stays or for family meals at home, speakers, Spotify gift cards, a Firestick for family movie nights, string lights, and toys to keep little hands busy.
The non-profit seeks individual and corporate donations to continue their outreach. Their 2023 goal is a modest $50,000, but the bigger focus is funding research for a cure for childhood cancers. To find out more about the Dickens and to donate, go to keepingalight.org
