In the summer of 2019, three families came together to support one another through a shared journey.
The Agnews, Hlavaceks, and Smiths surely have much in common, but what brought them all together was figuring out how to cope with cancer, specifically when it came to navigating the experience with kids. Learning that there are little to no resources out there for children who are dealing with cancer diagnoses among their parents and caregivers led to the inception of the Pickles Group, a peer-to-peer nonprofit organization focused on helping kids and their families get through these unforeseen circumstances.
Mark Agnew, 44, is the former CEO of Lou Malnati’s Pizza. Mark was diagnosed with brain cancer in January 2019. He and his wife, Carolyn Agnew, 41, live in Winnetka and have four kids: Molly, 12, Elinor, 10, and twins, James and Henry, who are 7.
Jeff Hlavacek, 51, and Erika Hlavacek, 46, were both airline pilots and met in 1997 while flying together. They got married in 2003, live in Wilmette and have two children, 13-year-old Francesca and 12-year-old Antonio. Erika was diagnosed with lung cancer in 2017, while Jeff found out he had colorectal cancer in April 2019.
Ned Smith, who used to teach at Northwestern University, was diagnosed with brain cancer in December 2018. His wife, Erin Smith, 40, said they eventually heard about another family dealing with the same diagnosis, the Agnews, and “ironically” Ned and Mark already knew of each other. The Hlavaceks happened to live down the street from the Smith family. The Smiths also have four children: sons Finn, 14, and Beckett, 12, and daughters Eliza, 9, and Cecily, 6.
Finn Smith and Francesca Hlavacek high-five as Eliza Smith and Molly Agnew look on as the kids brainstorm on a mascot on Dec. 7, 2021. (Chris Sweda/Chicago Tribune)
The Pickles Group officially launched in September, right around the time when Ned’s health quickly declined. The week that the website was going live and the group planned to start fundraising, he was admitted into hospice care “very unexpectedly,” Erin said, and Ned passed away on Sept. 25 at the age of 40.
“At first we said, maybe we just need to pause this and wait,” Erin said. “Then it came to me that this is exactly what Ned would want. He’d want to use his passing on as evidence that this group is so needed. I witnessed my kids who were obviously devastated and heartbroken about the loss of their father be comfortable enough to speak at his service about how the struggle actually made us stronger, and I swear it was a testament to Pickles.”
At the first meeting of the three families in 2019, Finn, the oldest of the founding families’ children, played a song about pickles, he said. The song became a fixture at the next few meetings and when the time came to name the group, Finn said, “we decided on pickles because that was something we laughed about together.”
Erin said eventually the families brought in Kelsey Mora, a child life specialist and therapist who now serves as the chief clinical program officer at Pickles. This led to the meetings becoming a bit more structured, with room for the kids to still have fun, but including activities like gratitude circles as a family and then having the kids break off into groups while the parents went to another room. When the COVID-19 pandemic hit early last year, the families began meeting via Zoom.
The families began to realize the greater need for a group like this once the word spread and people started asking if they could join.
Mora, 32, said she is “passionate about Pickles” because the nonprofit offers another layer of support for kids beyond hospital-based or one-on-one services in that it provides a group dynamic through community-based support.
“It seems imperative to really make sure that kids have a community of peers that understands and supports them and can relate to them,” Mora said. “And then also making sure these services are available to all kids in all communities. The opportunity to provide ongoing support after a diagnosis is really important.”
Mark, who currently teaches a couple of classes at the University of Chicago Booth School of Business, finished chemotherapy in early 2020. He said half of his brain tumor was removed but the other half was inaccessible, so he has to go for brain scans every four months.
Carolyn, a stay-at-home mom, said she remembered being in a “tailspin” for herself and Mark but more for their kids. She said they were struggling to navigate the uncertainty of Mark’s diagnosis as a family and recalled their daughter Molly saying, “I wish I could talk to people who knew what it was like.”
They got in touch with the Smiths, who then reached out to the Hlavaceks, and the Agnews hosted the first few meetings at their home in Winnetka.
“It was this enormous relief watching the kids experience joy and laughter together despite what we all knew all of us were going through otherwise,” Carolyn said.
“And that was the impetus for all of us,” Mark said. “It really was amazing that the kids then wanted to work together to find a way to support all kids going through this. They were the inspiration for this whole initiative saying they wanted to reach every kid and give them the opportunity to create community.”
Pickles Group Executive Director Cassy Horton looks on as Molly Agnew and other kids brainstorm on a mascot on Dec. 7, 2021. (Chris Sweda / Chicago Tribune)
Pickles’ Executive Director Cassy Horton, 34, signed on with the organization in July after hearing about the group in a spring class taught by Mark at U of C’s business school. Horton is in a part-time MBA program and has worked in youth services and education for more than a decade. Mark and Carolyn’s two daughters came to the class and gave a presentation on Pickles, Horton said, after the group had been working with Mora and wanted to evolve into a nonprofit and reach more people.
Pickles’ first pilot program wrapped up right before Thanksgiving and served eight kids, ages 6 to 12, in Chicago’s North Shore area, Horton said. The pilot program was split into two groups, elementary and middle school. Now, Pickles has around 35 kids enrolled in various programming planned for the new year.
The nonprofit hopes to expand to more neighborhoods in 2022 and is working on a number of new offerings to reach families throughout the Chicago area as a start. Horton said the group is also reaching out to local schools and hospitals for partnerships, adding that the long-term goal for the Pickles team is to come up with as many ways to provide support to as many people as possible. Programs in the works for the new year, some of which Mora said Pickles is an acronym for, include:
Pickles Illuminate, an annual memorial service for families who have lost someone to cancer. Pickles Connect, which is going to offer virtual opportunities for current and prospective families to meet, especially those who are not local to the area but are still interested in joining soon. Pickles Kindle, outings for kids to do fun activities like swimming or ice skating together. Pickles Learn, an online library of resources for families to access at any time. Pickles Empower, the organization’s cornerstone program based in support groups working through a curriculum designed by Mora with themes such as coping, community and hope. Pickles Support Kits, to distribute a bundle of information and sample activities to health care providers, schools and more to engage new families and give them a sense of what Pickles is about.
“My dream is meeting families where they are regardless of ZIP code, race, socioeconomic status, across the United States, so that support is accessible and there for families when they need it the most,” Horton said. “We’re excited to find and deliver more opportunities and reach as many families as we can.”
Erika, who is currently going through chemotherapy, said she hopes the word continues to spread about the group and everyone knows it’s a free program with the goal of being an “accessible and safe place for families to come together and know that community is there when we need it.”
Jeff said the beginning of their journey was focused on getting through treatments and figuring out their new normal. Jeff, who after surgery and chemotherapy has been cancer-free since March 2020, said there was no real support purely for the kids for the first couple of years.
“They didn’t see other children whose parents were going through the same thing, even though cancer is going on all around us,” Jeff said. “Once they got together with this group of kids, they bonded so well over this mutual journey and seeing that they can talk about the tough stuff but still be themselves and have fun and be kids, that’s one of the biggest things that they enjoy about Pickles. It really is a game-changer.”
sahmad@chicagotribune.com
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