Ethan Arbelo, 11, plays in the backyard of a friend’s home who also has terminal cancer on April 10, 2013, in St. Petersburg, Fla. Ethan often found himself imagining superhero scenarios. “I like them so much because, just as someone is about to die they swoop in and save them,” he said.

Little Man and the Pursuit of Happiness

Dying couldn’t stop Ethan Arbelo from living

When you’re a child, you tend to idolize adulthood. Childhood games revolve around what you want to be when you grow up. Maybe you took care of a baby doll, or taught a “class” to an audience of stuffed animals.

Maybe you just wanted a be a Marine, like Ethan Arbelo did.

“He really wanted to go skydiving but he wasn’t old enough. He wanted a piercing but he couldn’t risk an infection. He didn’t want to die a virgin, but he did. He wanted to grow up, be a drill Sargent or maybe a doctor. He spoke about kids because he wanted a lot but he was still a kid himself,” photographer Dania Maxwell said.

Ethan passed away July 3, 2014 at the age 12. He had brain cancer.

Ethan Arbelo, 11, runs along the beach an hour after leaving the hospital following an emergency related to his cancer on June 26, 2013, in Carlsbad, Calif. Diagnosed in March of 2012 with anaplastic astrocytoma grade III, a terminal brain cancer, Ethan was prescribed with merely life-extending, not curative treatment. With the help of his mom Maria Maldonado, he set out on a cross-country road trip to tackle a list of things he wanted to do. California was the hallway mark.

Maxwell met Ethan and his mother, Maria, two years earlier, in 2012. Maria had gained custody of Ethan just a few days after he was diagnosed with cancer. Maxwell was looking through local craigslist ads when she saw Maria’s posting. She needed a car so she could take Ethan to his doctor’s appointments. Maxwell replied to Maria’s ad, and told her that she was a photographer for the Naples Daily News and wanted learn more about Ethan and Maria were experiencing.

When Maxwell met the family, she was struck by Ethan’s unique position between boyhood and adulthood.

“Ethan’s room was a mix of boy things and grown up things. He slept with a teddy bear while his bed was surrounded by posters of strong army men. He liked a girl in school but was probably going to start homeschooling soon because his medications were becoming intense.

[His mom] wanted him to grow up and be a Marine just like her but she understood the gravity of what doctors said. Average survival with anaplastic astrocytoma, which is a type of brain cancer, is two and a half years,” Maxwell said.

Maria Maldonado comforts her son Ethan Arbelo, 11, after ordering him to rest in the shade during a fundraiser hosted by the Latin American Motorcycle Association of Fort Myers for Ethan’s health related expenses at Harley-Davidson on March 23, 2013, in Fort Myers, Fla. Maria, a single mom, often turned to her community for help because she struggled to maintain employment while attending to Ethan’s constant medical needs.

In the world of newspaper photojournalism, the story of a child with cancer is a heartbreaking, but familiar one. Ethan’s story, however, was different.

“I wanted to dig deeper and understand a little more about cancer and how two close people deal with the departure of one of them. I didn’t want to focus on the process of Ethan’s illness and whatever treatment he was going through because life is more complex than that.”

“I wanted to follow what happens to someone’s life at the doorstep of the end. We all deal with the idea of death differently. In Ethan’s case, doctors told him he was dying but he wasn’t done living. That is something we can probably all learn from,” Maxwell said.

Ethan Arbelo, 11, plays with a radiotherapy mask given to him after completing the last of 28 sessions of radiation at Florida Hospital on May 2, 2013, in Tampa, Fla. Doctors believe that he could expect to live another nine months.

Ethan Arbelo, Maria Maldonado and Lea Sellwood, left to right, look out onto the desert at a meteor impact site on June 25, 2013, just outside of Winslow, Arizona. With Ethan’s help, Maria put an itinerary together for a cross-country road trip so he could see faraway places. They invited Lea, a 9-year-old friend with leukemia they knew from All Children’s Hospital in St. Petersburg and were on their way. “This is a beautiful view, ain’t it?” Ethan said. “B-E-A-U-tiful.”

Maria Maldonado shaves Ethan Arbelo’s, 11, mustache for the first time on July 31, 2013, in Lehigh Acres, Fla. Ethan was proud of the visible sign that he was becoming a man. “It’s my respect,” he would say about the hair.

Maria wanted to help her son live as much life as he could before his time was up. They went on a cross country road trip. He kissed a girl (but wanted a stripper). He became an honorary marine.

“Ethan was in this in between stage of boyhood and adulthood. He was old enough to know adult things he wanted to do but he was too young to have a lot of them. He wanted to have sex. He wanted kids. He wanted marriage, but he was at an age where if he had those things they would probably hurt him.

His mom, Maria was trying to balance the things Ethan wanted with the things that she knew he couldn’t handle. Even though the story ends shortly after Ethan died, it is as much about life as it is about death.”

Ethan Arbelo, 11, kisses Ashley Schroeder at a mud park named, The Redneck Yacht Club on May 25, 2013, in Punta Gorda, Fla. Ethan’s mom took him to the mud park as a compromise after Ethan had asked for a stripper for his 12th birthday. It was the first time Ethan had kissed a girl. “It felt like ice cream melting on my tongue,” he said.

Maria Maldonado puts on Ethan Arbelo’s, 12, shoes as he looks at his homecoming date Lydianna Mize on October 12, 2013, in St. Petersburg, Fla. The dance was hosted by All Children’s Hospital for pediatric patients. “I’m nervous for Ethan,” Maria said. “This might be his first and last homecoming.”

“Doctors told him he was dying, but he wasn’t done living.”

Ethan Arbelo, 12, waits for the oncologist with his mom, Maria Maldonado, shortly after a radiologist delivered news from an MRI that new tumors were growing in his brain at All Children’s Hospital on September 24, 2013, in St. Petersburg, Fla. Maria is hit hard by the news and writes to a friend, “I need a minute to breath before heading home.” Meanwhile, Ethan, jets his hands into the air and said, “I’m superman.”

Ethan Arbelo, 12, plays with the headgear while riding in an assault vehicle on the day he was made into an honorary Marine at the 4th Assault Amphibian Battalion Headquarters on October 31, 2013, in Tampa, Fla. Ethan’s mom had planned for months in secret to make Ethan an honorary Marine on this day. “Becoming a Marine, makes you feel legendary,” Ethan said.

Maxwell spent as much time with Maria and Ethan as she could, whether it was on the clock or off. She wanted to be there for all the experiences, big and small.

“There are a few things that stand out to me, but I think my favorite moment was the day Ethan went to the Homecoming dance that was put on by the children’s hospital. Maria worked so hard tinkering with every detail making this night perfect for Ethan. She even got Lydianna, the older sister of one of Ethan’s cancer buddies to be his date.

Ethan ate it up. He loved his tux. He loved his shiny shoes. He loved the way he looked. After Maria gelled his hair back he looked at his reflection in the mirror and said “guapo!” (“handsome” in Spanish). Just before heading out to the dance Ethan asked Maria what date it was because he wanted to say that she was wrong, “the date is Lydianna.”

While playing video games, Maria Maldonado yells at Ethan Arbelo, 12, for not putting more effort into using his left arm, which had begun to paralyze from swelling in his brain on December 2, 2013, in Lehigh Acres, Fla. As Ethan’s sole caregiver, Maria struggled at times with managing her stress and finding a balance of tough love with Ethan as his condition worsened. “This is his battle, and he needs to fight with everything in his power, no matter how hard it gets,” Maria said.

Reggie Iacono, right, helps Ethan Arbelo, 12, choose a poster for his bedroom while out for a boys’ day on February 21, 2014 in Fort Myers, Fla. Reggie, the son of one of Maria’s friends, moved in with Maria and Ethan in January to act as Ethan’s caregiver for a few months while Maria was back at work.

Too weak to walk, Ethan Arbelo plays with Superman action figures in a reclining chair where he spends most of his days on January 17, 2014, in Lehigh Acres, Fla. “It’s heartbreaking watching your child revert,” Maria said.

Maria Maldonado sits in the Gulf of Mexico with her son, Ethan Arbelo, after he requested to take a dip on April 16, 2014, on Fort Myers Beach, Fla. Two friends helped Maria carry Ethan to the ocean, one of Ethan’s favorite places to be. It was the last time he visited the beach.

As time passed, Ethan’s body started to change, but not from puberty like most boys his age. His body swelled as the cancer worsened, soon rendering him nearly immobile.

Maxwell was present when Ethan passed away.

“He was in his moms arms. It was the saddest thing I’ve seen. Experiences like those sear into your memory and don’t go away. I had agreed with Maria early on that I would be there for the good, the bad and the ugly. Ethan wanted to show other kids his story. So, I had a responsibility to be there, both for myself and for the people I was documenting. The frames I made felt heavy and although I didn’t make many I never stopped looking for moments that could tell the story.

It was very uncomfortable making pictures. The last few hours were pretty emotional. It’s a tragic event, but I believed that it was more important for me to be there to document than to allow those feelings of discomfort or sadness to take over.”

Maria Maldonado and Ethan Arbelo, 12, watch on as violinist Nanette Grant plays a private concert on June 12, 2014, in Lehigh Acres, Fla. “I’ll do anything to get his spirits up,” Maria said.

Maria Maldonado cries hugging Ethan Arbelo, 12, as he transitions into death on July, 3, 2014, in Lehigh Acres, Fla. “In those last minutes when you know your son is taking those last breaths, all you’re doing is praying for death for you too because you can’t imagine life without your baby,” Maria said.

Maria Maldonado watches on as Marine pallbearers carry her son, Ethan Arbelo’s casket. In October, Ethan was made into an honorary Marine. He died with the rank of Sgt U.S. Marine E-5. “Thank you all for loving my little man,” Maria said during the funeral at First Christian Church on July 12, 2014, in Fort Myers, Fla.

Two days after Ethan Arbelo died, Maria Maldonado receives a tattoo of a drawing Ethan made with their initials just before losing movement in his hands, at Ink Cafe on July 5, 2014, in Cape Coral, Fla. “This way he is always with me,” Maria said.

Even though the story ran last year, Maxwell is still very much in touch with Maria. They speak often, and Maxwell visits her from time to time. The newspaper even ran follow-up stories on Maria, who started a non-profit called Ethan’s Journey’s to help other children with terminal cancer the chance to fulfill their “bucket list,” as she was able to do with Ethan.

Ethan’s legacy will live on through his mother, and through the story she helped Maxwell tell.

“I hoped that people would see this story and live a little deeper, or give their kids an extra squeeze. I think the story forces us to confront the inevitability and sadness of death without letting us hide behind gore or fear. I hope the story would help people understand their own losses better,” Maxwell said.

All images courtesy of Dania Maxwell and the Naples Daily News

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