Over the course of the past year, we’ve all been asked to make sacrifices in our routines, our fun and our freedoms. We’ve had to remain vigilant about ways to stay healthy and, by extension, keep those around us healthy as well. For people who are immunocompromised, however, they had already grown accustomed to rigid safety protocols and isolated living. They were prepared for the new guidelines simply because it’s how they were already living their lives — avoiding large crowds, wearing a mask, constantly washing hands and vigilantly applying hand sanitizer.
“It wasn’t really a shock to them because they’ve been under strict guidelines, not from the Centers for Disease Control and Prevention, governor or president of the United States but from their doctors, nurses and hospital staff,” says Zak Geier, director of Patient & Family Relations for The Dragonfly Foundation. “When these patients are first diagnosed, they are cautious about being around large crowds and places that could be filled with germs.”
Dragonfly was created in 2010 to help bridge the gap in emotional care of pediatric cancer patients and their families. The mental toll the pandemic has taken on these patients and their families is palpable. Because isolation is often a part of cancer patients’ lives, they relish special days and celebrations even more. So, in 2020 when they were told not to celebrate Thanksgiving, Christmas or New Year’s with family and friends, the news was hard to digest. Geier recently spoke to a mother of a Dragonfly who said they had not seen her parents since the pandemic started — only through FaceTime. While talking through a screen is better than nothing, it’s certainly not the same as in-person communication.
“Sometimes you just need a hug — that human interaction — especially when you’re going through a trying time,” says Geier. Of course, hugs have been off-limits, too, causing patients to feel further cocooned. There is a mental aspect that goes into being positive and happy, and distractions in the form of activities and events truly help. In light of the coronavirus, however, a lot of Dragonfly’s activities and events were shut down. For instance, Dragonfly had a suite at Heritage Bank Arena, and that’s been closed since March 2020. They had Reds tickets, but the Reds didn’t allow fans last season. They had tickets to Kings Island, but the park’s schedule was in flux much of that season. Plus, their big holiday party was canceled. The staff at Dragonfly wasn’t about to give up, though.
“We got creative and thought outside the box,” says Geier. “We wanted to let them know that no matter what’s going on in the outside world, we’ll be here for them.”
They started hosting drive-thru events. Last summer they held one in which they distributed snow cones. In December, they did one in lieu of their annual Christmas party that included Santa and Mrs. Claus. “When cars first pulled in, patients received a piece of paper with a list of toys to pick from. They highlighted their selection and gave it back to us,” says Geier. “They drove through and received a cookie- making kit, picnic blankets and macaroons. Then at the end of the ride, they were presented with their chosen gift.”
These events serve to break up the monotony of the day, allowing families to get out of the house and enjoy something fun where they don’t have to worry about disinfecting or following protocols.
Pandemic fatigue is a real thing — the public has grown weary of functioning in this new COVID-19 reality. For Dragonfly patients, it’s even worse because they have limitations on visitors in the hospital. Visitors are also limited on scan days and during operations and treatments. “That’s mentally daunting on these families who want to support their loved one,” says Geier. “Nobody wants to go through anything like that alone.”
One Dragonfly mom noted that having a child who has been diagnosed with cancer is tough enough, but COVID-19 has made it even harder.
“What made battling cancer bearable was being able to have friends and family go on the journey with [us],” she says. “My daughter loved having family visit her at the hospital and having big celebrations at home with friends at the end of each chemo cycle. I loved being able to sit and talk with other parents in the hospital break room. COVID has made being a cancer family even more of an isolating experience. Luck- ily, Dragonfly has done their best to still create a sense of community with patients and their families by hosting virtual events and providing children gifts and experiences that remind them that they are not alone in this battle.”
Geier suspects that even when life returns to some semblance of normal, Dragonfly families will remain cautious.
“I think they will tread lightly, and rightfully so, because they’re taking care of immune systems for a loved one who is sick,” says Geier. “One thing I’ll say about our families, though, is that they are resilient, strong and brave. They do not complain.”
That’s why he loves interacting with these parents; he always walks away feeling inspired.
“Despite what they’re going through, they’re positive, loving, caring individuals,” he says. “I can’t say enough about them. They are amazing human beings.”
He shares the story of a family with twin daughters. When one of them was diagnosed with an illness and admitted to the hospital, any time a social worker would bring a new book to her room, her daughter’s face lit up. The mom recently reached out to Geier and told him she started a book collection because books were such a big help for her daughter when she was hospitalized.
“She donated her collection of books, which are for kids of all ages and interests, in order to pass that joy on to other patients,” says Geier. “We’ve been there, unable to leave the hospital,” the mom had said.
“Books helped pass the time.”
“This is what I’m talking about,” says Geier. “Despite what these families are going through, they think of ways to help others navigate the journey. These families thank us all the time, but really we should be thanking them because they show us how we should be living — by enjoying life and appreciating everything we have.”
The Dragonfly Landing is located at 506 Oak St., Cincinnati, OH 45219. For more information, call 513.494.6474 or visit dragonfly.org.