Lessons In Life And Death From 12-Year-Old Lola : The Picture Show Lola Muñoz entered a painful experimental treatment for a rare type of brain cancer, hoping to ultimately help other children down the line. Photographer Moriah Ratner captured her journey.
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Lessons In Life And Death From 12-Year-Old Lola

Lola Muñoz belts out the words to her favorite songs while she cleans her room on April 28, 2017. Moriah Ratner hide caption

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Moriah Ratner

On Aug. 26, 2016, Lola Muñoz was diagnosed with a diffuse intrinsic pontine glioma, an inoperable brain tumor. DIPG affects children almost exclusively, with a 0% survival rate and an average prognosis of nine to 12 months.

Photographer Moriah Ratner spent over a year and a half documenting Lola's journey, first in New York and, later, in Chicago following a family move.

Lola's story has been published by The Washington Post and National Geographic. Ratner talked to NPR about the challenges of photographing a long-term project so early in her career and the toll it took on her.

Lola attempts to maintain normalcy by hosting a slumber party on Nov. 4, 2016. Lola's increased maturity level made it difficult for her to connect with her peers, often leading to exclusion. Moriah Ratner hide caption

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Moriah Ratner

Lola and photographer Moriah Ratner share a quiet moment. The two considered each other close friends. Ratner says sometimes Lola would grow sad, knowing that "the only reason" she met Ratner was because of her sickness. Marianne Barthelemy hide caption

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Marianne Barthelemy

How did you discover Lola?

As part of an assignment for my photography class at Syracuse University, I reached out to the Make-A-Wish Foundation of Central New York in the fall of 2016. They said they needed someone to photograph a "rush wish," which meant the child was terminal.

I met the Muñoz family at their home on Fort Drum in Jefferson County, New York (a 90-minute drive north of Syracuse). We connected by baking chocolate cupcakes and preparing for the annual Halloween fair at Lola's school. Lola had just completed six weeks of radiation therapy.

After being admitted to Upstate Golisano Children's Hospital for severe dehydration, Lola asks her mother, Melissa, "Why is God punishing me?" She lists off her wrongdoings to her mother, apologizing for the mistakes she has made in the past. Moriah Ratner hide caption

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Moriah Ratner

Though cooking is one of Lola's favorite pastimes, Lola feels too exhausted and sick to stand for a few minutes. Moriah Ratner hide caption

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Moriah Ratner

What made you decide to continue this project after your assignment was done?

Lola did not fear dying but, rather, being forgotten. I fell in love with her immediately and promised I would work my hardest to make sure her legacy lived on with integrity and grace. I also wanted to use my photographs to defy stereotypes associated with childhood cancer and create awareness in hopes of stimulating a call to action.

Lola prepares for 10 rounds of radiation by getting a mask made after becoming more symptomatic shortly after her diagnosis. A rushed MRI in August revealed tumor progression. Lola's radiologist urged Lola to begin her treatment as soon as possible, as her condition could worsen in just days. Moriah Ratner hide caption

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Moriah Ratner

How long did you spend working on this project?

This project became my life. I usually spent four days a week with the Muñoz family. I would drive from Syracuse to Fort Drum — usually on Thursday or Friday — spend the weekend and head back to Syracuse on Monday. I'd even go to Mass with them on Sundays — and I'm Jewish.

All of Lola's appointments were in my calendar, as well as any school functions, festivities or family outings. I even joined the family on their annual weeklong camping trip; that summer it was near Niagara Falls. Lola would call me "her shadow" and introduce me to her friends as her "paparazzi."

Melissa comforts Lola after she vomits from taking her chemo. Lola's physical symptoms were extreme; the medical trial she entered was all about how much she could withstand. Moriah Ratner hide caption

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Moriah Ratner

After Lola passed, I spent a week mourning with the family in Chicago.

About halfway through the project, I know you had a particularly difficult time. Can you talk about what happened and how you worked through it?

I think my lowest point was when the spring 2017 semester came to an end. I declined a prestigious internship offer because I would be away from Lola, and I had promised to see this project through. I knew I needed to be able to live with the choices I made when I looked back on the project. But my dedication came at a price.

One evening in May, my friends invited me to dinner. There was a book laying on the couch called Lessons in Death and Life. I picked it up and immediately became overwhelmed with intense anxiety. I stepped outside and called Lola's mom, who calmed me down. My friends went to a faculty member expressing concern about my mental health; the professor asked what would be left in my life after Lola was gone if everything I did revolved around her.

Melissa, Lola and Lola's younger sister, Izel, enjoy down time together as heavy rains restrict the family's plans while camping in Youngstown, N.Y. Moriah Ratner hide caption

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Moriah Ratner

Agustin, Lola's father, teaches Lola how to float on her back at a hotel swimming pool on April 9, 2017. After four months of experimental chemo, Lola met her breaking point and ended the medical trial — a decision based on her quality of life. Revitalized, Lola gained the energy to enjoy her favorite activities again. Moriah Ratner hide caption

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Moriah Ratner

A few days later, I went home and was able to spend time with my grandpa. He said, "You have a gift, and that gift is you. You don't have to prove anything to anyone. The only person you have to prove is yourself. You have done beyond a mitzvah." I told him how I didn't feel like the same person as I was last year. He said that is called growth.

Tell us what it was like to spend a year and a half with a family dealing with a devastating diagnosis. Can you tell us about how you felt?

I felt like I was never doing enough, and I was scared to lose the person I was when I was with Lola. The grief became all consuming. I had low energy and wasn't sleeping well. I could physically be in a space, but my mind would be elsewhere. I had trouble remembering what day it was, to the point where I'd mix up deadlines. Even though my friends were trying their best to relate and support, I felt they couldn't possibly understand, because they weren't experiencing what I was, leaving me feeling very alone.

After symptoms worsened, Lola's oncologist scheduled a rushed MRI on Dec. 6, 2017. Lola speaks to her mother on the phone, expressing fear that her tumor has grown. Melissa, absent from the appointment because she felt unwell, attempts to calm Lola by listing off foods she will cook for Lola in the coming weeks. Moriah Ratner hide caption

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Moriah Ratner

"Melissa said taking pictures reminds Lola that she's sick," Ratner wrote in her journal in 2017. "Lola tells me, 'No pictures, I want you to have fun.' Melissa tried to explain to Lola that I could be both her friend and a photographer." Moriah Ratner hide caption

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Moriah Ratner

Melissa was pregnant with her fifth child and was due in April 2018. A successful ultrasound appointment on Dec. 1, 2017, revealed that Melissa, then five months pregnant, was expecting a girl. Lola (left) prayed to meet her new sister but said that if she didn't meet her sister on Earth, then from heaven she would watch her sister grow. Moriah Ratner hide caption

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Moriah Ratner

Lola becomes extremely exhausted after attempting to build a snowman on her own. The uncertainty of how much time Lola had left to live left the family on edge. Much was unknown about Lola's brain tumor, diffuse intrinsic pontine glioma, including how slowly or quickly Lola's symptoms could worsen. Her family cherished what days they had left to spend together and believed each day was precious. Moriah Ratner hide caption

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Moriah Ratner

At a certain point, I knew I had to be present and stable or my work would suffer. I started journaling and found that a blank page was an open and honest space of release. I began biking an hour a day when the weather was good and indoor rock climbing when it wasn't. I went to bed earlier, ate well and saw my therapist regularly. As the year progressed, I found the support system I needed to go on and maintain a healthier balance.

When she could no longer move her legs, Lola was confined to her great-grandfather's reclining chair. Her sister, Izel, still too young for school, would pass the days with Lola. Moriah Ratner hide caption

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Moriah Ratner

On many levels, this was a journey about my own self-discovery.

Lola chose to be buried with her crucifix and rosary; both were always by her side throughout her illness. Moriah Ratner hide caption

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Moriah Ratner

Any other experiences you would like to share?

Another tough moment was not being there when Lola passed. I visited her in Chicago three days before her health made a sharp decline. My mom's 60th birthday was April 1, so I surprised her and flew from Chicago to D.C. While boarding my flight back to Syracuse from D.C., Lola's father texted me that she had worsened overnight. I wasn't sure if I should fly to Chicago or go back to Syracuse to grab more equipment. I decided to get on the plane to Syracuse, then catch a flight to Chicago later that evening. When I landed in Syracuse, Lola had already passed.

But I realized that her story is not defined by the moment she took her last breath. This is a story about her life and who she was.

Agustin comforts Lola's brother Ellis while visiting Lola's burial site at Mount Emblem Cemetery on what would have been her 14th birthday. Moriah Ratner hide caption

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Moriah Ratner

It has been a privilege and honor to tell Lola's story. Our relationship has been a gift and taught me that nothing in the world is more valuable than time. I attribute much of my success and identity to her influence.

Selma Bernadette Rose Muñoz was born one week after Lola's funeral. Selma's middle name honors Lola (Bernadette was Lola's patron saint, and roses were Lola's favorite flower). Ellis (right) helps Lola's older brother, Soren, change Selma's diaper. Moriah Ratner hide caption

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Moriah Ratner

Agustin shares a moment with Selma. Moriah Ratner hide caption

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Moriah Ratner

Izel places a light inside a lantern in remembrance of Lola's passing. During the Pediatric Brain Tumor Foundation's Starry Night 5K in Chicago, hundreds of lanterns were lit in the night sky to symbolize hope for a cure and honor children in the fight against brain tumors. Moriah Ratner hide caption

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Moriah Ratner

Lola Muñoz passed away on April 2, 2018.


Moriah Ratner is a freelance photographer based in Portland, Ore. Follow her on Instagram: @moriahratner.