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Paper Airplanes and Easy Mac

March 19, 2019

Aron Stark

In the outpatient Hematology/Oncology clinic at a Florida children’s hospital, patients sit in giant chairs, waiting for blood counts. If they hit their lucky numbers for the day, they get to spend a few more hours in those chairs while their veins are filled with cryptically-named drugs, like vincristine and doxorubicin.

On my first day volunteering in the clinic I was asked to visit a 6-year old named Ryder in one of the isolation rooms. I knocked, foamed in, and gave Ryder and his parents my spiel: “Hi! I’m Aron, I’m a volunteer with Child Life. Wanna hang out and play some games or do some arts and crafts?” This is the part where I weave in some imagery to set the scene: Ryder is an adorable 6-year old boy wearing a pastel button-down shirt, with hair gelled into a perfect swoop. He’s got wide, brown eyes and a classic Florida tan earned through countless days spent playing outside. Ryder’s parents seem young. It’s hard not to notice that he looks exactly like both of them.

Ryder asks if we can draw Ninja Turtles and Minions, so I sit down, and we get to work. Drawing a Ninja Turtle is easy if you limit yourself to the head, and kids love being able to choose the color of their favorite turtle’s mask. Ryder was partial to Leo’s blue mask. After almost an hour of talking and drawing turtles, we start working on our Minions. I show Ryder how to start with a pill shape and sketch the details lightly before coming back over with a pen and erasing the leftover pencil marks. We’re just about to start coloring when a nurse comes in to de-access Ryder’s port. I ask Ryder and his parents if they would prefer I leave the room. Ryder tells me to stay and keep drawing with him. The nurse works while we color, and then asks us to stop so she can remove Ryder’s Tegaderm port dressing. For those of you unfamiliar with Tegaderm port dressings, they’re clear coverings that keep the access site sterile while a patient is getting their chemo. More importantly for this story, they have an adhesive strip around them, sticky enough to stay in place for 7 days at a time if necessary. If you’ve ever helped a child slowly remove a band-aid, imagine something like that, but infinity times more painful since the area around the port is so sensitive.

In other words, our arts and crafts session takes a turn: Ryder is in tears, holding back screams, clinging to his parents’ hands, eyes fixated on the nurse as she peels away the clear plastic. Once the adhesive is unstuck, the nurse removes the needle and covers the bump in Ryder’s chest with his choice of cartoon-themed band-aid. As Ryder’s parents step out of the room to do paperwork or talk with the doctor or something, we get right back to our work of coloring Minions and talk a little less. When his parents return, Ryder begs them for a few extra minutes to finish coloring. Finally, with Minions in hand, we exchange see-you-laters and fist-bumps.

For the next few months, I see Ryder almost weekly in the clinic; he’s part of my “crew” — the Thursday afternoon kids. Some days we play Spades with the nurses and other kids in the unit. Other days we do arts and crafts projects, play catch with stress balls, or if Ryder is feeling tired he takes a nap or watches TV. We talk about everything: school, birthday parties, homework, playing T-ball and golf with his dad. Sometimes, Ryder asks if he can have Easy Mac, which the nurses always have stocked. I walk him to the snack drawer, he grabs an Easy Mac, and we open it up. I help him fill the cup with water to the fill line and lift him up so he can reach the microwave and press the 3 minutes button, then the add-30-seconds button. Three and a half minutes later, I get the hot noodles from the microwave along with the cheese packet for Ryder to mix together and enjoy during the day’s activities.

On the day of my last shift, most of my crew was in the clinic. I did my rounds and made my way to Ryder, who was waiting with his parents and wanted Easy Mac. He jumped out of his chair and tried to run to the snack drawer but tripped on the way over. I told him that’s why we don’t run in the clinic. His mom said it was symptomatic.

He grabbed the Easy Mac from the drawer, we filled the cup with water to the fill line, and he asked me to press the buttons myself instead of picking him up this time. I cooked the mac and delivered it to Ryder, and he asked if I knew how to make paper airplanes. I said yes, and he asked me to teach him. I found a stack of printer paper and walked him through the process. Fold in half lengthwise, bring the corners in, repeat, etc. Like any 6-year old with developing fine-motor skills and a short attention span, Ryder made 30 different paper airplane designs and we tested them all out. When it was time to leave, we exchanged goodbyes and fist-bumps. Ryder’s parents thanked me, wished me luck in med school, and told me to follow their Facebook page for updates on Ryder’s journey. When I got home, no longer a volunteer at the children’s hospital, I found the page and my eyes were drawn to the “about” blurb. It read, “Ryder is a 6-year old boy diagnosed with diffuse intrinsic pontine glioma”, or DIPG. I turned to Google for the Medscape and Wikipedia articles. DIPG is an aggressive, inoperable brainstem tumor with an average onset between 5 and 9 years of age, a median overall survival of 9 months post-diagnosis, and a 5-year survival rate less than 1%. Ryder and his family had a few more months.

In this moment. I see my memories with Ryder in a different light — I know what the doctors and the nurses and his parents knew the whole time. I wonder how I would have carried the weight of this knowledge through all of those months. Would I have done anything different? Should I have done anything different? Perhaps the future holds answers — it feels so distant.

Now, a few years closer to that future, I reflect on these memories often. I think about the idealism of a naive pre-med student. I think about the afternoons spent playing spades, microwaving Easy Mac, and befriending a family profoundly affected by childhood cancer. I’ve spent thousands of hours learning about pathophysiology and treatment, but I still have so much more to learn about what families like Ryder’s go through, and what it means to take care of patients. I think this story sticks with me because, when I remember Ryder, I remember the idealism that brought me here. And I feel just a little more prepared to confront the unknowns that lie ahead.