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.

Lola Muñoz winces as blood is drawn for more tests following six weeks of radiation near her home in Upstate New York. In December 2016, she enters a clinical trial at St. Jude Children's Research Hospital in Memphis.

Lola quickly started losing hair during the weeks she underwent radiation treatment in fall 2016.

Melissa Muñoz comforts her daughter after Lola is hospitalized in December 2016 because of an infection.

A world upended

In May 2017, Lola participates in the Michael Mosier Foundation’s Defeat DIPG Superhero Sprint & 6K in Bethesda, Md.

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.

Listen to Lola talk about the clinical trial (0:20)

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.

Though cooking is one of Lola's favorite pastimes, by February 2017 the chemotherapy leaves her too exhausted to stand in the kitchen for even a few minutes. Her mother prepares dinner while little sister Izel plays.

After becoming severely dehydrated in February 2017, Lola is admitted to a local hospital. “Why is God punishing me?” she asks her mother.

During more chemo at St. Jude’s in March 2017, Lola struggles with the side effects. Her mother rubs her back as she vomits.

Celebration and heartache

Lola's father, Agustin Muñoz, teaches her how to float during a surprise weekend of fun in Albany, N.Y., in April 2017.

“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.”

Listen to Lola talk about her tumor (0:19)

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.

The family enjoys dinner out during the special weekend in Albany, a gift of the Maddie's Mark Foundation, which is dedicated to helping children with major illnesses enjoy their “best days ever.”

The Muñozes stop at Niagara Falls last July during their annual summer camping trip.

Melissa, Lola and Izel wait out heavy rains during the family’s camping trip.

Making it through winter

After symptoms of her cancer return in August, Lola undergoes an MRI that reveals the tumor is growing. A face mask is adjusted as she prepares for more radiation.

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.

Lola celebrates her 13th birthday on Sept. 24 — a milestone her parents hadn’t expected her to reach.

At a December doctor’s appointment for her mother, then five months pregnant, Lola holds the ultrasound images showing that a baby girl is on the way.

Surrounded by her siblings on Christmas morning, Lola is thrilled by her parents’ present: a rainbow emoji onesie.

With furnishings already boxed and loaded from his family’s house in Watertown, N.Y., Agustin prepares for the drive to Chicago in February. The Muñozes decided to relocate to be near relatives there.

‘No longer held prisoner’

By March, Lola no longer can move on her own. Melissa helps her get to the bathroom.

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.

Listen to Lola talk about death (0:15)

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.”

Lola’s speech and hearing have both deteriorated badly. She sleeps most of the time.

Nineteen months after she was diagnosed with DIPG, Lola dies, surrounded by family, on April 2.

The Muñoz family says their final goodbyes before Lola’s casket is closed for her funeral service and burial on April 6. From left, her younger brother Ellis, mother Melissa, sister Izel, older brother Soren and father Agustin.

Roses, Lola's favorite flower, are thrown onto the casket before her burial.

Design and development by Joanne Lee. Photo editing by Wendy Galietta and MaryAnne Golon.

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