I walked into her room, she gave me a sly smile, rubbed her hands together slowly and asked, “Ready to lose?” Then, she set out the deck of cards.
A teenage girl diagnosed with cancer in the midst of a pandemic. While that may seem like an added element of isolation in a time when isolation is paramount, in fact she was gaining an entire new group of people ready to support her – our community on the inpatient unit of the Cancer and Hematology Centers at Texas Children’s Hospital.
In the Cancer Center, we have the privilege of getting to know patients and families well because of their lengthy or frequent admissions.
The child life team addresses coping concerns, diagnosis education, legacy and bereavements, normalization and play needs for hospitalized children. We don’t just know patient names, ages and diagnoses. We know their family, the names of their pets, their favorite Disney characters, how good they are at UNO, whether they like to draw a peacock or a panda. We know when they need to talk about what’s hard about being in the hospital to help make it better and when they need to play to forget.
The doctors, nurses, physical therapists and staff serving patients and families know them, too. We amplify unity by providing care and support for patients and families as our community. As a child life team we make it a priority to bring patients together through intentional programming anchored by play. We understand the significance of creating connections and building a community among people who are mere doors apart from each other but have the opportunity to share so much more than a diagnosis.
Outside the hospital, all over the world, communities have had to adapt to COVID-19. As the virus spread, doors began to close. Homes and churches, schools and businesses, parks and restaurants. People feel what it is like to be isolated, perhaps understanding for the first time what so many cancer families face all the time. Social isolation.
Hospitals became the forefront of preparedness as teams of health care providers adjusted and adapted to the pandemic. As part of the adaptation, the doors leading to our hospital had to change as well.
Protecting people meant staying away from them. In our hospital that meant volunteers, community partners, visitors, toy carts, artists, additional caregivers and a multitude of others were asked to practice social distancing from our doors. An incredible army of people who support play and normalization needs was asked to pause so we could help flatten the curve. They are big shoes to fill and I look forward to when our cohorts return. So, Child Life began to try and mitigate the absence.
Terms like “frontline” became common as staff who continued work battened down for longer shifts and geared up in personal protective equipment to make sure patients were protected, needs were met and nothing was missed.
“Necessity is the mother of invention,” the old English proverb proclaims. Children need to play and they need friends. So we are going to play and patients are going to know their friends on the floor—even if they cannot physically meet right now.
So then, as did people all over the world, Child Life adapted the approach to play and community-building to create opportunities to feel connected while apart.
In fact, we turned the challenge into a game.
Every day our team huddles in the morning and looks over the patient census. Based on all the things we know about patients and their needs, their interests, strengths and diversity, we create a new daily challenge game.
We placed a giant poster “Leader Board” on the floor. Every day we divide and visit patients in their rooms to ignite the competition; and has it ever caught fire.
Imagine the show “Minute to Win It” happening every day inside patient rooms in the Cancer Center. We didn’t even need prizes; bragging rights and Leader Board ranking was enough. And, when the challenge was timed, the ante only upped the competition. Cup stacking and collapsing, ping pong challenge, Play Doh sentences, speed Spot-It, balancing, building, trivia. Whoever does it fastest or answers the most correct wins the day and finds their name atop the Leader Board. We divided leaders into “kids” and “teens” to ensure age accounted for a fair shake and watched the resilience of play unfold.
We also incorporated photo projects and utilized creative themes burgeoning from social media as families creatively sheltered at home, like a hospital-version of painter’s tape chalk art. And we marked holidays one-on-one—timed St. Patrick’s Day gold coin hunts, Mother’s Day interviews and photos from patient beds, individual egg hunts in rooms, Earth Day and super hero day art.
What we found too is how much patients started looking forward to visits from someone bringing something purposeful and fun that tied people and days together. We might be in goggles, masks and shields but those protections let us walk in their door and provide support in the ways pediatric oncology patients need. In a time when so many doors shuttered.
The excitement quickly spread. We had a teen patient asking to create the daily challenge, a parent knocking on the door first thing in the morning offering inventive suggestions too; nurses help, doctors and PT/OT. When a long-term patient discharged recently she joked about missing out on the daily challenge and asked if we would still be doing it when she returned for her next round of treatment.
The community is still here. The day we did the paper airplane challenge – measuring whose would fly the farthest – patients wanted us to report back if someone beat their distance so they could try again. Patients comment and joke about falling behind “Sara” or “Andrew” even without having ever physically met their opponents. Nurses scout out final scores on the Leader Board, report results to rooms and draw doodles on “interview your nurse” day; even the more reserved patients find their way to participating when challenges are tailored to meet their individual play needs.
In the absence of so much, we discovered a beauty in the challenge of creating and sustaining community through play all while staying apart from each other.
As for my friend with the deck of cards, it was the game “Speed” at play and I lost far more hands than I won. She found herself atop the Leader Board again, much to the chagrin of her competitive neighbors on the floor. Neighbors who also happen to be patients, on a floor that also happens to be her community. Children and families who embody something common in our community—a refusal to lose and a smile in the face of a challenge.