Early March, YueYue’s family contacted Zhou Xuan, the head of the medical team at Daisy’s Home, requesting for a stay at the hospice care center. They had just returned from Europe, on an emergency flight back, to seek medical support for their daughter—YueYue’s tumors had resurfaced, despite having received various tumor treatments in both China and Europe.
However, health regulations mandated that prospecting patients who had just returned to the country quarantine for 14 days before a hospital may admit them; thus, their entry was delayed. After contacting many hospitals, YueYue and her family were finally accepted into a private children’s hospital to stay at for the time being.
Fourteen days later, outbreaks of COVID-19 took the world by storm, with Europe taking the largest hit. Originally, YueYue and her family were told they would transition to Daisy’s Home immediately after quarantine, but again their stay was delayed, due to how pervasive COVID-19 was in Europe.
By this time, YueYue had already experienced many symptoms, some extremely painful, and urgently needed to be put on an analgesic (painkiller). Zhou Xuan contacted every one of her medical connections, searching for a hospital who could provide YueYue morphine injections (morphine is a highly effective analgesic, but in China, because children’s pain management has only recently begun, only a handful of pediatricians in the country can effectively deliver dosages to children), but to no avail. Hospitals wouldn’t accept anyone who had just returned from Europe—even if they underwent two weeks of quarantine and tested negative twice.
For two more days, YueYue continued to suffer without resolve. Finally, on the 16th day since returning from Europe, YueYue and her family moved into Daisy’s home. To everyone’s relief, once the child began taking morphine injections, her condition stabilized and her symptoms became relatively controlled.
Ever since they returned to the country, YueYue’s parents had become overtaken by anxiety; they barely ate, despite how much bread they bought. It wasn’t until they entered Daisy’s Home that they had their first serious meal. Sun Yang, head of the volunteer team at Daisy’s Home, made it his mission to cook for YueYue’s family, being inspired by the grandmother of DuoDuo (the previous patient here, who had recently passed).
“A while ago, DuoDuo’s grandmother made us a good meal every day,” Sun Yang said. “His parents barely ate it, so many nights she gave it to me. Now it’s my turn to work.”
Sun Yang made home-cooked meals to help YueYue and her parents associate this place with the warmth of a home. In the dark of night, kindness was passed around in this way, like energy that flowed through a circuit of people, lighting each of them, even if only dimly.
In their previous hospital, YueYue’s father had slept for only 2-3 hours a day, never taking off his clothes or shoes, always ready to rush out and call the doctor or nurse. His weight had dropped from 180 kg to 140 kg. But at Daisy’s Home, he reported feeling more at ease, with Sun Yang’s presence and meals.
Soon, YueYue became blind.
One day, she asked her father to drive her to the supermarket to buy ice cream. Her dad said to her, “I’ve dragged the refrigerator from the supermarket back to our house. I’ll take you to go buy it.” Then, her mother held YueYue against her chest as she walked to the living room, opened the refrigerator loudly, took out the ice cream, and said, “We’ve got the ice cream! Now dad will go check it out.” Finally, her father picked her up and carried her to the bedroom.
It is through these small things—recalling memories from her old life, living situations and adventures through her imagination, and her parents—that help YueYue manage her daily life of medications and rising symptoms.
Her condition developed rapidly—almost too rapidly. End of March, she began experiencing delirium, hallucinations, and occasional convulsions. Her face became ghostly pale. She began spending most of her days sleeping.
At the onset of April, YueYue passed away. Her mother said that YueYue was perhaps relieved—to finally be at peace, after suffering all those months.