Life with Little Man: Diagnosis that led to a prayer, a list and a moonlit kiss (Part 1 of 3)

Posted at 1:00 PM, Aug 02, 2014

His first kiss happened long after sunset, illuminated by headlights and perfumed by exhaust fumes on a swath of land in Punta Gorda known as the Redneck Yacht Club. Ethan Arbelo had not yet turned 12; the blonde was 26.

Warning: This story may be offensive to some readers.

The Redneck Yacht Club was a compromise of sorts. There’s an adage that if you want a dog, first ask for a pony, and following suit, Ethan, 11, had asked his mother if he could have a stripper for his birthday.

She thought it over for a while, wondering if she could pull it off without the Department of Children and Families showing up at their Lehigh Acres duplex. It was hard to turn Ethan down, not knowing how many birthdays he had left.

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. (Dania Maxwell/Staff)



“Well, I can’t get you a stripper,” she told him. “But I can get you as close as possible.”

So this was Ethan’s early present, three months ahead of his August birthday. This was how Maria Maldonado and her son ended up in the back of a swamp buggy on Memorial Day weekend 2013.

As the two rode around the mud park, monster trucks blared a strange mix of Southern rappers and country crooners. Women with dirty feet flashed their breasts for beads. A tumor continued to silently invade Ethan’s brain.

Maria taught her son some basic redneck etiquette: It’s OK to look, but don’t stare. Throw your beads and get on with it.

The two rode with Timmy Mock, a 26-year-old from Lakeland they’d just met who was sympathetic to Ethan’s predicament. He sipped Busch Light from a koozie that read “IT AIN’T GONNA LICK ITSELF” as he carted mother and son around the mud park.

Ethan whipped his beads back and forth as they drove around the property. Before long, a girl on an adjacent buggy motioned for him to throw them over. Ethan pantomimed a lifted shirt, but the girl refused.

She did not earn Ethan’s beads.

Ethan prays before going to bed as his mom, Maria, stands by his side on August 11, 2012. (Dania Maxwell/Staff)

He woke early the next morning, same as always, and headed to the food trucks around 8 in search of biscuits and gravy.

As he waited for his breakfast sandwich, he noticed two girls in line, one braless in a lace tank top and the other in an undersized bikini. They learned he had cancer and seemed less creeped-out by his stares.

After breakfast, Maria and Ethan walked to the front of the park for a swamp buggy ride they were promised the day before. A passerby on a golf cart offered them a ride.

“What’s your name?” the man asked.

“Ethan,” he replied.

“I’m Franklin.”

“I’m fighting cancer,” Ethan said.

Later that night, Maria parked a borrowed golf cart on the parade route and watched Ethan twirl his beads around at pretty women. Word got out that he was terminal.

Click here to watch Ethan's video diaries »

The girl in the bikini from breakfast recognized Ethan and approached the golf cart. She lifted her shirt, offering her chest as a gesture of goodwill.

As she leaned in to kiss his cheek, he moved his lips to hers and she allowed him a long, wet kiss. It felt, he’d say later, like ice cream melting in his mouth.

Before he grew gray hairs and began using a wheelchair, before he began sleeping all day and wearing a diaper, Ethan Arbelo was a fifth-grader at Orange River Elementary School in Fort Myers, an 80-pound kid who liked swimming and play-wrestling his mom. She called him her little man.

He was 10, with a reputation as the class clown. He talked tough, but got bullied sometimes because he was too small to back it up. He’d never had a girlfriend but considered himself a ladies’ man. He had a full-blown crush on a girl named Victoria Brooks because she was pretty and she wasn’t mean.

“That’s basically the two main reasons,” he said.

A character from one of Ethan Arbelo's favorite movies, Despicable Me, is pasted to the wall of his bedroom next to a photograph sent to him from a family friend on February 20, 2014. (Dania Maxwell/Staff)

He was still a boy, but not in the ways he used to be. He watched “Scooby Doo” but also “Judge Judy,” sometimes in the same day. He played with a stuffed panda puppet but called him Dr. Greenthumb, after a weed-cultivating character in a song by the rap group Cypress Hill.

His hero was his mother, who is part Irish, part Puerto Rican and 100 percent spitfire. She looked younger than her 40 years but was as proud of her age as she was of her Marine Corps background and the tattoos and heartbreaks she’d collected over the years.

She sometimes said Ethan, her third and youngest child, was the best thing to come from her failed marriage. She’d divorced his dad, Jose “Tito” Arbelo, in 2004, triggering a custody battle over Ethan and his older sister, Mio, that never seemed to leave anyone happy.

■  Watch Ethan's video diary: "It's not easy, it's not hard"

It was one of her scheduled weekends with Ethan in February 2012 when she noticed her son’s eyes crossing. She took Ethan to an eye doctor in Fort Myers, who found fluid building up inside his head. They rushed him to the hospital in St. Petersburg, where another doctor found a tumor taking root in his brain.

She remembers looking it up on her phone as soon as they got the diagnosis for anaplastic astrocytoma grade III. About 70 kids were diagnosed with the same disease each year. Most patients made it only two to five years after that.

She told her son the news and even then, right from the beginning, Ethan knew everything was going to change.

Ethan Arbelo, 11, kisses Ashley Schroeder at the Redneck Yacht Club on May 25, 2013, in Punta Gorda, Fla. It was the first time Ethan had kissed a girl. "It felt like ice cream melting on my tongue," he said. (Dania Maxwell/Staff)

They all had their own concept of Future Ethan.

His father imagined him hanging out the window of a slick car, flirting with all the girls.

His mother saw him with lots of kids and a good wife, still the same old clown, still a mama’s boy.

Ethan pictured himself as a Marine, a real tough guy, maybe even a drill instructor.

He understood the cancer, because his grandma had it in her lungs. She was dead now. He told himself to keep fighting.

He started making lists of things he wanted to do, things he thought he’d have a lot of time to accomplish but suddenly might not. He wrote a Christmas list asking for a PlayStation 3 and a cancer-free brain.

Ethan Arbelo receives radiotherapy at Florida Hospital on November 22, 2013, in Tampa, Fla. The band Cali Swag District plays on loudspeakers, as Ethan is allowed to listen to his choice of music. (Dania Maxwell/Staff)

After another trip to the doctor, he asked his mother if all the treatment was not really to treat him but to give him life for just a little bit longer.

“Yes,” she told him, but she added it was to extend his life long enough for scientists to find a cure. It was a lie, of course, but he wasn’t a teenager yet, so he still believed her.

■  Watch Ethan's video diary: "About to go to a doctor's appointment"

Six days after his diagnosis, his parents came to an agreement. Their daughter would continue to live with Tito, who would keep his job as an auto mechanic. Maria, who’d been fired at Ethan’s bedside from her job as an accountant at a remodeling contractor, would be Ethan’s caretaker.

Maria, once a truck driver in the Marines, approached the cancer from a military standpoint. She told Ethan that he was a Marine and that this was his battle and that he needed to fight with everything in his power, no matter how hard it got.

“And in the middle of everything else,” Maria Maldonado remembered, “he said, ‘I want you to do whatever it takes, Mommy. I want to live.’”

She called herself his commanding officer and said if he listened to her, they’d get through the battle together.

She told him Marines aren’t allowed to die without permission — and she hadn’t said it was OK yet. One day, she would have to suck it up and give him permission to let go. They referred to this directive as “the order.”

There was a time in late May 2012, a little more than two months after the diagnosis, when the doctor said Ethan wouldn’t make it more than a few days, maybe a month, tops. That night, his shunt failed and fluid backed up in his brain. He kept yelling out in pain. Maria called in hospice.

She sat on the end of his bed and asked Ethan a question that would come to define everything that followed: Do you want me to help make you comfortable? Or do you want me to help you live?

“And in the middle of everything else,” she remembered, “he said, ‘I want you to do whatever it takes, Mommy. I want to live.’”

Ethan plays with his mom Maria while waiting for the oncologist at All Children's Hospital on April 10, 2013 in St. Petersburg.(Dania Maxwell/Staff)

Ethan lived a few more days, then a few more weeks, then six more months. He celebrated his 11th birthday, Halloween, Thanksgiving and Christmas, one after the other, like falling dominoes on the calendar.

He talked a lot about proving the doctor wrong.

“I don’t really care about him. I’m going to do what I’m going to do,” he said.

He hung cancer posters in his room by the ones of superheroes and became an involuntary expert on the language of brain cancers.

“Anaplastic astrocytoma,” he’d say, annoyed. “Pronounce the word, people. It’s not that hard.”

If he was worried, he never showed it. He didn’t feel sick.

“They are wrong, trust me. I know they’re wrong,” he said. “At this age, it’s not going to happen to me. The big man’s going to take care of it.”

His mother told him there was no expiration date on the bottom of his foot, that it didn’t matter what the doctors said.

“Those books can say three to five years, doesn’t matter,” she said. “First comes medicine, then comes God.”

When they got bad news, she remembered the time his tumor doubled, how she went home and found a clinical trial that even the doctor hadn’t known about. She remembered how the treatment shrank the tumor by 78 percent and how that bought her son a little more time.

She counted on miracles like that.

In June 2013 there was another MRI appointment, where they would find out if the radiation had been working. The day started at 5:31 a.m., after several rounds of the snooze button. Maria preferred early-morning appointments so Ethan would have to fast only until noon.

Maria Maldonado hugs her son Ethan Arbelo, 11, on the second day of their camping trip to the Redneck Yacht Club on May 25, 2013, in Punta Gorda, Fla. Maria decided to take Ethan on the camping trip after he asked for a stripper for his 12th birthday. "Well, I can't get you a stripper, but I can get you as close as possible," she said. "Hence the Redneck Yacht Club." (Dania Maxwell/Staff)


On the way to St. Petersburg, Ethan got out of the car at a rest stop and threw up into a storm drain. He threw up again in the hallway of All Children’s Hospital a few minutes before his turn with the radiology team.

An anesthesiologist noticed his new facial hair: “Is that a mustache you’re growing there?”

“Yeah,” Ethan said. “It’s called respect.”

■  Watch Ethan's video diary: "I have no more mustache"

The doctors took him away and gave his mom a pager, like one you might get at an Olive Garden. While he was under, she met with a staffer in the lobby about possible clinical trials.

Of the 15 Maria had found online, Ethan was eligible for only three. Two were in New Hampshire and one was in Germany. A blood clot made him ineligible for most others.

During a smoke break, the pager went off. Maria packed up her Newports, put out her cigarette and walked inside.

A nurse gave Ethan some graham crackers, and Dr. Joseph Potthast, a pediatric radiologist, led Maria into a separate room for results.

She’d had a bad feeling all morning, an instinct that the tumor was progressing. But in the hallway, the doctor’s words surprised her.

Ethan Arbelo, 11, plays at a friends home after completing 16 of 28 radiotherapy sessions, on April 10, 2013, in St. Petersburg, Fla. Ethan saw himself as a superhero of sorts. "I took the radiation, so I might turn into the hulk," he said. (Dania Maxwell/Staff)




“We have pretty good news,” he said. One of Ethan’s tumors had shrunk by roughly an inch, and everything else appeared stable.

Back in the car on the way home, Maria broke the news.

“You’re winning, Ethan,” she said, and the two fist-bumped above her headrest.

Maria pointed the car south on Interstate 275. Around mile marker 20, she started to cry.

He was confident he’d beat it.

■  Watch Ethan's video diary: "I want to make today the best day ever"

“When I started off, mine was a stage III, so I’ve been fighting. I’m pretty sure it’s stage II,” he said that summer.

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 facial hair. (Dania Maxwell/Staff)

With the help of his mom, he started making a bucket list, just in case.

He wanted to shoot a gun, to lose his virginity, to get Obama out of the White House, to go skydiving.

He and his mom made a mental checklist of his wishes, which ended in a plan for a cross-country road trip. He wanted to see the Grand Canyon, visit his grandfather in New Mexico and put his hands and feet in four states at the Four Corners. Maria set up a fundraiser page on GiveForward and asked for help to make it happen.

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 Winslow, Arizona. They had set out the week before on a cross-country road trip, with a bucket list for Ethan to experience the things he wanted. "The crater was pretty cool," Ethan said. (Dania Maxwell/Staff)


Sixty-five donors pitched in more than $5,600. They left June 15 for their first stop in Alabama.

It had been a year since Ethan left school, and exactly zero of his classmates had kept in touch. In Tampa, they picked up Lea Sellwood, a 9-year-old from the cancer circuit who was diagnosed with leukemia at 7. Ethan wanted to bring a friend along for the ride.

■  Watch Ethan's video diary: "Hopefully she says yes"

The trip was important to Maria because she didn't want Ethan to have any regrets. She wanted him to see the waterfalls in Alabama and the desert in Arizona. She wanted him to visit with his grandfather, to hear her dad's stories.

When it came time, she wanted Ethan to have no doubt of who he was and where he came from. When he took his last breath, she wanted to know that her son had a full life, as full as he could get.

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RELATED: Part 2 - Life with Little Man: As they said he was dying, Ethan Arbelo wasn't done living