It was several months after learning she had a rare brain tumor — and several more before she would turn 13 — when Lola Muñoz drove from Upstate New York to Tennessee with her mother.
The choice had been Lola’s: to enter a clinical trial testing whether two chemotherapy drugs might be safe for patients with DIPG. Diffuse intrinsic pontine gliomas, striking in childhood at the base of the brain, are especially aggressive, difficult to treat and deadly. Lola opted to take part in the trial at St. Jude Children’s Research Hospital in Memphis with a singular hope.
“I’d rather help find something for the other kids that will get DIPG than to not help at all,” she explained.
For nearly a year and a half, photojournalist Moriah Ratner followed Lola and the Muñoz family on a journey marked by pain as well as laughter, fear as well as joy, anguish and finally peace. Her camera captured a girl dealing with inevitable loss while trying resolutely to live.
A world upended
A lazy eye. That’s what Melissa and Agustin Muñoz thought the problem was when their daughter’s left eye initially stopped tracking along with her right. Then she had trouble moving the left side of her face, and in wrenching succession a series of doctors and scans upended their world. It was August 2016.
In the Muñoz family, Lola was the second of four children. Her little brother and sister were too young to understand her illness, much less grasp the prognosis. Only 10 percent of DIPG patients survive two years.
Her parents and others worked to maximize the good days, particularly after Lola, exhausted by the chemo, withdrew from the clinical trial. She wanted to return to school and some semblance of living — joking with friends, dancing to music. By May 2017, she had regained enough strength to do a “Defeat DIPG Superhero” 6K, sprinting off at the start. The family took their annual summer camping trip, this time to Niagara Falls.
But in August, new scans showed her tumor was again growing. Lola began both radiation and chemo.
Celebration and heartache
“Do you know what the worst part is about having a tumor?” Lola asked during the fall, when she often felt shunned at school. “The pretending — pretending like you’re better than you feel for the people that pity you, so you can show them that nothing is wrong.”
She had celebrated her 13th birthday in September with cupcakes and video games. An incredible milestone given the circumstances, one that needed no pretending. And there was a second celebration in early December when an ultrasound revealed that Lola’s mother was expecting another girl. A “rainbow child,” Melissa said — a child who is born after a loss.
Making it through winter
Inexorably, the cancer kept advancing. Lola went from a cane to a walker, from keeping her own journal to needing someone to write for her. Her parents decided to move the family to Chicago to be near relatives for support. Agustin worried that Lola might die before winter ended, when the ground would be too hard for a burial.
‘No longer held prisoner’
Lola wanted pity from no one. “I don’t want them to remember me as the little girl who died,” she confided one day. What she did want was for scientists “to start working on a cure” for her kind of cancer, with much more funding for such research.
She died April 2 and was buried four days later, in the pink dress decorated with flowers that she had just worn for Easter. Her baby sister was born the following week.
“She is at peace,” her mother posted online. “No longer held prisoner by DIPG.”