Unexpected Isolation

After that brief visit and once Parto was officially moved to CHOC, regulations on her visitations were much more enforced. Once she began chemotherapy, I did not get to see her in person until months later. There was the occasional facetime or phone call, and of course, our group chats remained lively, but there were moments of complete isolation that severely affected Parto during her treatments. There was a period of time during her stay at the hospital when Parto was placed in complete quarantine. She remembers feeling trapped and not being able to leave her hospital room at all.
“I couldn’t even leave my own room… People would be outside my hospital room talking, but I couldn’t go out there,” she said. “By day five, I forgot where I was. When someone opened the door to the outside of the hospital I forgot what part of the hospital I was even in because I was stuck in that room for so long.”
Prior to hospital lockdowns, children’s oncology wards would often have weekly events to help boost the spirits of younger patients during their treatments. Actors dressed up as princesses and superheroes would spend time playing and singing with patients and their families, music artists would come and perform, even large corporations like Krispy Creme would host doughnut and coffee days. Kelsey Chapman, the CHOC Adolescent and Young Adult Program Coordinator for oncology patients, is the face behind all of these events. When hospitals had to go on lockdown and in-person events were placed on hold, she and her team had to begin brainstorming new ways to maintain a positive atmosphere for patients like Parto who were stuck in their hospital rooms.
Like many groups and organizations around the world, the AYA team began with small events held over zoom. However, as many people experienced during quarantine, there is a moment when zoom fatigue starts to set in. Once zoom meetings lost their significance, Kelsey began to search for new ways to keep events going for patients.
“I reached out to organizations about donating supplies and I would put together art kits and put them at valet. Patients would come and pick them up and then an art teacher would teach a class on zoom, and they all had their supplies at home.” Kelsey said. This gave patients something more tangible to do while maintaining their safety. Once stricter lockdown restrictions were lifted in early 2021, Kelsey and her team were finally able to begin hosting socially distanced in-person events again. Some of the socially distanced events Kelsey is most proud of include an outdoor movie night, a drive-thru disco, and even a graduation ceremony for patients who were still in school during their treatments.
Parto has an outgoing and extroverted personality, so attending in-person events at the hospital in the last few months of her treatment significantly helped her maintain a more positive mindset. However, when those events were not going on, Parto still had to find other ways to keep herself occupied while confined to her hospital room. “We watched so much Netflix,” Roxy chuckled, thinking back on the number of shows she and Parto binged while at the hospital. One of Parto’s favorite shows, Grey’s Anatomy, was something that she was able to watch in its entirety for the fifteenth time. It is her favorite show. “I know that’s a lot, but I had a lot of time,” Parto laughed.
Another thing that helped keep Parto’s spirits high during treatment was butterflies. In my years of knowing her, I have always seen Parto as a social butterfly. Her smile is contagious, and she has a sense of humor that leaves our group of friends laughing uncontrollably no matter where we are. Even at her lowest, Parto was able to break out of her cocoon of isolation, spread her wings and bring about laughter to anyone that walked into that hospital room.
Butterflies have always represented an important piece of symbolism for change and freedom in Parto’s life, but after she was diagnosed she found a new significance for them in her life. “They became a symbol of hope and strength…the second I was diagnosed, I started seeing them everywhere,” Parto said while fiddling with the golden butterfly ring that she often wears on the index finger of her left hand. Since the representing color of Osteosarcoma is a yellow-gold, most of her butterfly themed jewelry is that color.
Now that Parto has ended chemotherapy—her last chemotherapy treatment was on July 19, 2021—butterflies also represent a returning sense of freedom to her life. She explained her release from the hospital as a bitter-sweet ending to her third run with cancer. While Parto was excited to reunite with friends she had not seen for months, she also struggled with saying goodbye to her friends still in the hospital. Nonetheless, with her still being very involved with CHOC, Parto is still able to attend events with the patients and nurses she bonded with in the hospital while she waits to be officially declared into remission next July.
Words cannot describe the happiness I felt when I saw Parto again after her last chemo session. Even as I sat with her in her room, surrounded by the bright pink walls, her designer brand collection and Charlie Gillespie themed merchandise, it was hard to hold back tears while she told me about her time in and out of the hospital. Of course not everything is back to absolute normal in the world, but one thing that never changed during the nine month period from November of 2020 to July 2021 was Parto’s strength and radiant personality.