On a November morning last year, Ethan Arbelo snuggled up to his mom on the couch and pointed to a picture of his brain on her laptop screen.
“That’s what my head looks like now?” he asked.
Maria Maldonado nodded. He pulled up her Facebook page and commented on the photo.
screw cancer im stronger
Ethan, 12, lounged unaffected in camouflaged PJs, sipping chocolate milk from a Marines mug. He finished, then headed to his bedroom to fight a war on his Xbox.
Before they left Lehigh Acres for an appointment with his radiologist, Maria took her son in the hallway and told him the chemotherapy might not work this time.
“I want to fight with it until it’s dead,” Ethan said. “I don’t want this tumor to win.”
“This is your Hail Mary, like in football,” she said. “It’s the last thing you can do to get in the end zone.”
“It’s OK,” Ethan said. “I know it’s going to work. God makes miracles, doesn’t he?”
“Yes he does,” she said. “We’ll figure it out, OK?”
“I’m not going to die,” he said softly.
“OK, well you better tell God that,” she said. “Tell him to knock it off.”
The dual forces of medicine and puberty were manifest on Ethan’s upper lip. He was proud of his mustache and the respect he perceived it commanded, but his so-called commanding officer still wanted him to look like a kid. After their grown-up conversation, she brought him into the bathroom for a shave.
Ethan sat on the toilet while Maria moved the razor across his face and behind his neck, careful not to nick him.
“Sit like a good Marine ‘til I’m done shaving, OK?” she said.
When she was through, he stood up, noticing he was almost as tall as she was.
“So sexy,” he said, looking into the mirror.
“Right?” his mom said. She fluffed up his hair and sprayed him with some Samba cologne he’d swiped from his dad’s house.
“This smells kind of papi chulo-ish,” his mom said.
Ethan expected his dad to stop by, but hours ticked by without his arrival.
“I think he lied,” Ethan said.
Before leaving for the doctor, he grabbed an apple from the kitchen.
“You know what they say,” he said. “An apple a day keeps the you-know-what away.”
“This tumor is — it’s a big bad tumor and I’m scared that we’re not going to win, that the tumor’s going to win." - Maria Maldonado
There were certain things they got to know once they were inducted into the world of pediatric cancers. It was a club no one wanted to be a part of.
Maria knew it was 126 miles each way to All Children’s Hospital in St. Petersburg. Ethan knew how to pronounce the technical name of his brain tumors, anaplastic astrocytoma. He knew when he made a friend at the hospital that he was hitching his heart to someone who might not be around when it was time for his next appointment.
Maria connected with a group of cancer moms at the hospital. They added each other on Facebook, shared each other’s posts and swapped advice about chemotherapies and clinical trials from their own experience. When she needed them, they offered an understanding ear, an outlet to vent or a couch to crash on.
Maria and Ethan were on the way to the hospital in early December when she got word that one of the cancer mom’s sons, a 3-year-old, was “transitioning,” as they called it.
“What’s happening to Morgan?” Ethan asked when she got off the phone.
“He’s dying, baby. It’s his day,” Maria said. “Lakeysha just called. It’s time for him to get his wings.”
“That sucks,” Ethan said quietly. “I can’t believe Morgan is dying.”
He started crying a little. “I just get stressed out losing a friend.”
“Shit just got real, huh?” his mom said.
“If I have to fight for 10 years to get rid of it, that’s fine by me,” Ethan said.
She promised they’d visit Morgan after their appointment. They continued north to St. Petersburg. The radio stayed tuned to a Christmas station:
It’s the most wonderful time of the year
It’s the hap-happiest season of all
At the hospital, one of Ethan’s doctors, a soft-spoken blonde named Stacie Stapleton, came in and took a seat next to him.
“This is the deal with us continuing to fight as we always have,” she said. “This tumor is — it’s a big bad tumor and I’m scared that we’re not going to win, that the tumor’s going to win. And I’m willing to fight it as long as you want to and your mom tells me whatever you want to do.”
“I want to fight with it until it’s dead,” Ethan said. “I don’t want this tumor to win.”
“We all die,” the doctor said. “And making it a, um, a peaceful process where everyone respects your body and, um, is gentle with you and not like it’s on TV and they’re doing stuff to you — I just want you to think about that. If the tumor wins, would you want to die naturally or do you want, um, it to be a sort of a chaotic, um, stressful process?”
“Normal. I’d rather die and just kind of ...” Ethan said, his voice trailing off. “Like, what is death?”
“Well, um, that’s a big philosophical question that I don’t, I don’t know. I just know we can’t walk and talk and feel our heart beats. I don’t know what it is, if there’s some sort of transition to another place, another state,” Stapleton said.
Ethan asked if he could do chemotherapy and radiation at the same time.
“If I have to fight for 10 years to get rid of it, that’s fine by me,” he said.
“If it’s going to hurt you worse than it is now, I don’t want you to do it,” Maria said. “’Cause right now, you can still laugh, you can still play, you can sit on the bed and play your video games with your buddies. What if you’re not able to do that if you take the chemo? What if it makes things worse?”
“I don’t want you to be scared, OK?” Maria told Ethan.
“That’s fine,” he said.
“It’s not OK,” Maria said. “Quality, not quantity. Do you know what that means? It means it doesn’t matter how long you live your life, it’s how you live your life that counts. Do you want to make memories or do you just want to make time?”
“Make memories,” Ethan said.
“So maybe, we’ve talked about this, maybe that’s the way to go,” she told him.
After leaving the hospital, they began the short drive to Morgan’s house.
“I don’t want you to be scared, OK?” Maria told Ethan.
Back in the master bedroom, Lakeysha Mize lay with her son Morgan, who had dwindled to 27 pounds. His eyes were closed and an oxygen tube was strung between his ears. Maria stroked his thin blond hair.
“Don’t be afraid,” she said quietly. “You’ll be with Ethan soon.”
She went out to the kitchen to see if Ethan wanted to say anything. They walked back into the bedroom together.
“Hi Morgan, it’s Ethan. Remember me?” he said.
There was no response.
“He’s sleeping,” Ethan said.
They said goodbye later that night, then drove home to Lehigh Acres. Morgan died two days later, less than two weeks before his fourth birthday.
After their hospital visit, Maria updated her Facebook page with a post about the doctors saying there was nothing more they could do for Ethan. A woman left a comment inviting her to learn more about medical marijuana.
It wasn’t legal in Florida, but even the National Cancer Institute acknowledged that cannabinoids had the potential to kill cancer cells and reduce the growth of tumors.
After being connected to the right people, Maria was assured a package would make it to their doorstep just before Christmas.
On Dec. 10, a man from a local funeral home came to their home to make final arrangements.
“The reason he’s here,” Maria told Ethan, “is because — you remember I told you this morning, we’re getting that package? But there’s no guarantee it will work. And if it doesn’t work, you know what’s going to happen. What’s going to happen?”
“The D word,” Ethan said.
“The D word, that’s right,” his mom said. “Want to say it?”
“D-E-A-T-H. Death,” he said.
“Don’t be depressed, OK?” she said.
The package arrived later that month, and she began administering the cannabis paste, pills and candy. She worried that it wouldn’t work or that it was too late, but not as much as she worried Ethan would die while there were unused, if not alternative, weapons in her arsenal.
Ethan spent Christmas Eve at his dad’s place, which was actually his grandparents’ house, about 20 minutes away from his mom’s home.
Nearly all the relatives on his father’s side were spread throughout the home, drinking on the porch, chatting on the couch, helping out in the kitchen.
As midnight drew closer, they met in the living room to start swapping gifts.
“You want to come open your presents?” Ethan’s grandmother said.
With a limp hand, he lifted the green paper off a Superman action figure, then a Nike shirt, then a Nerf gun.
He thanked his dad and his grandparents for the presents then went off to bed.
After his diagnosis, Ethan saw his grandparents regularly, but his father stopped by infrequently.
Tito Arbelo remembered walking straight to the elevator at the hospital when his son was diagnosed. He left the building and just kept walking, in no particular direction, for miles at a time, until he was lost.
“I was completely destroyed,” he said. “I haven’t been my person since then.”
It angered him when people called him a deadbeat dad — after the divorce, Tito had primary custody while Maria worked a job in Winter Haven. She’d assumed full custody of Ethan immediately after his diagnosis. He begrudged those who didn’t acknowledge his early years with Ethan.
“It’s like they don’t know that part,” he said. “They think I’ve been absent.”
“I think your daddy loves you,” Maria said. “He just can’t see through his hurt.”
He admitted he didn’t have the best relationship with his son, said they didn’t understand each other.
“I loved him, but I was always very strict,” Tito said.
He gave a lot of reasons for fading from the picture since the diagnosis: He wanted to make sure Ethan’s sister, Mio, got enough attention. It was hard to take time off from work. He didn’t know how to talk to Ethan about death. He didn’t want his son to see him cry.
“I think it was better for him that I not be at the hospital sometimes,” he said.
Ethan wasn’t convinced. In the beginning, he was mad when his dad didn’t show up, but as the time since his diagnosis passed, he had grown to expect it. Maria told him that sometimes daddies weren’t as strong as mommies.
“I think your daddy loves you,” she said. “He just can’t see through his hurt.”
At the beginning of the new year, an 18-year-old named Reggie Iacono moved into the spare room of Ethan and Maria’s three-bedroom duplex.
His mother, an old friend of Maria’s, had pleaded with her to let him stay for a couple of months. Reggie’s girlfriend was expecting their first child, and he was crashing with friends without a permanent home. They worked out a trade: Reggie would help with Ethan, and Maria would take care of the rent and food.
Since August, Maria had been working as an accountant for the property management company that owned their duplex, leaving Ethan with his grandparents and working from home when that wasn’t an option. Her boss understood Ethan’s constant but manageable needs, and it was the longest job she’d held since Ethan had been diagnosed.
In that regard, Reggie’s arrival was well-timed. He was a caretaker, but he was more than that. One day at the hospital, after wiping the residue from a bag of SunChips from Ethan’s hands, a nurse asked about their relationship.
“We’re more like brothers,” Ethan told her.
By the time February rolled around, Ethan was spending most of his time at home, with occasional trips to a friend’s pool or to stay with his dad, who was starting to be more available. When Reggie asked to borrow the car to take Ethan out on the town a few times, Maria slipped him a $100 and told them to enjoy a boys’ day.
On Feb. 21, after a haircut at G O’s Barbershop, Reggie pushed Ethan’s wheelchair across the parking lot of Hooter’s and onto the outside deck. The two dressed in stripes, Reggie in a tank top in shades of gray and Ethan in a navy and white striped T-shirt. Ethan’s favorite waitress, a waiflike brunette named Andrea Salazar, was working, and he greeted her with a quick kiss on the cheek.
After lunch — two orders of wings and curly fries — Reggie and Ethan popped into the Edison Mall.
They headed first to Lids, where Ethan picked out a red Oklahoma City Thunder flat bill hat, and then to Spencer’s, where he chose a poster of Maxim’s “hometown hotties,” a row of toned bikini models wearing red, white and blue bikinis with their backsides facing the camera.
Walking past the shops, Ethan tossed a coin in a mall fountain, where he made a wish he never revealed. He asked to go into the Disney store, where he picked out a stuffed animal of Sulley from “Monsters Inc.” and gave it a squeeze.
Reggie humored him for a few minutes before gently suggesting maybe it was time to shop somewhere more adult. They left without making a purchase.
"I beat my cancer,” Ethan said in late March, more than two years after his diagnosis. He was having trouble walking, so he sat in his favorite brown recliner watching “Transformers." A pair of Marine Corps dress blues — the outfit he would wear to his funeral — hung on the door of his mother’s closet at the back of the house.
“You did?” she asked him.
“Uh huh,” he said.
The night before, Maria had noticed signs in his eyes from the hydrocephalus, the swelling on his brain, but today, she saw him looking like himself for the first time.
“I look like a man,” he said from the recliner.
“You’re incredible, baby,” she told him.
She secured a bib around his neck and gave him a dinner of sausage pizza and Pepsi in a sippy cup.
“I want a wife,” he said later that night.
“What do you want a wife for?” she asked.
“So I can grow up and have kids,” Ethan said.
His preteen body was already changing so much, but cancer had its own way of leaving its mark. In April, Ethan had resumed steroid treatment, his skin growing and stretching to accommodate the weight gain. Thick red stretch marks spun webs across his body at the same time he began sprouting more body hair and developing the skin of a teenager.
“Is that a pimple?” Reggie asked him one day, pointing at his chin.
He had less privacy than the average boy his age but all the same urges, on one occasion finding himself in the classic teenage predicament of being caught by mom.
His outer body didn’t match his inner self. He still thought he was sexy, but he was embarrassed by his growing body. He wanted more than ever to lose his virginity, but it didn’t seem likely while he was wearing a diaper.
Maria was home all the time now, having quit her job after about six months to accommodate Ethan’s increasing needs. His teacher, a woman named Bobbie Henderson who taught homebound children in Lee County, continued to stop by as she had for two years, but Ethan was finding it hard to focus on his lessons.
One night about a week before Easter, Ethan’s parents carried him to the bathroom, encouraging him to try to hold his own weight, which had grown to about 180 pounds.
“C’mon, c’mon,” Maria said.
“Little steps,” Tito guided.
A few days earlier, hospice had moved Ethan’s hospital bed into the living room, where he could watch the big TV and have a view of the front yard. The doctor said it was most likely the beginning of the end.
“It’s like becoming a child again, becoming a baby again,” Tito said.
Later that month, Ethan arrived at the Hooters in Naples in the back seat of his mother’s car. Before leaving, she packed him an extra T-shirt and a set of baby wipes in case he had an accident.
Hooters waitresses from across South Florida were competing in a swimsuit competition, and a group of local Marines had been asked to judge. Sgt. Joel Slaymaker, a Marine recruiter who met Ethan in December and had since grown close to the family, had invited Ethan to be a guest judge.
The area in front of the stage in the parking lot was blocked off, and a group of Marines carried Ethan and his wheelchair over the barrier so he could sit beside them at the judges’ table. Maria ordered him a plate of barbecue wings and curly fries and cut the food into pieces.
Jason Derulo’s “Talk Dirty” blared through the speakers as the women tugged at their bikinis behind stage. An emcee began introducing the contestants.
“No. 2, in fierce animal print, we have Haley from Fort Myers” ... “Her favorite foods include corn dogs and sushi” ... “She wants to travel the world and own her own farm.”
Slaymaker helped Ethan write down his notes: No. 5, “great spirit,” No. 11, “bang bang.”
Before they left, the contestants circled Ethan’s wheelchair so his mom could take a photo.
To his right was a waitress with smooth, caramel-colored skin and a green bikini that matched her eyes. As the camera flashed, he reached up toward her chest and copped a feel. In the photos that followed, the girls are seen with open mouths and wide smiles, their jaws dropped.
Ethan, slumped in his wheelchair, is smirking.
Just before his bedtime in early May, Maria caught Ethan scratching the stretch marks on his stomach.
“Give it some fight, for fuck’s sake,” she yelled. “Stand up. I’m tired of telling you not to do that.”
She smacked his hand, the slapping of skin making an audible thwack.
Maria knew about caregiver syndrome — knew about the burnout and the resentment and the anger someone like her was bound to feel — but she wasn’t immune to it.
“I love you, but I want some fight back in you,” she said.
She looked down at her hands, remembering the cocktail ring she wore on the hand she hit with.
“Now I feel like an asshole,” she said.
She apologized to Ethan, who had grown quiet.
“Sorry, my ring got you,” she said, kissing him. “But I bet you won’t scratch now.”
Even months later, she wished she could take it back.
By June, Ethan was saying very little. He stayed in bed, watching TV or occasionally playing on a tablet.
“He’s just eating and sleeping now,” Maria said.
His closest companion, besides his mother, was a tiny black cat she’d given him a few weeks back. He called the kitten Noah, the name he thought he’d someday choose for his son.
While Ethan was eating pizza one night, Noah jumped onto his hospital bed and sat on top of Ethan’s head.
“I’m his father,” Ethan said, breathing heavily and then starting to doze off.
To pass the time, Maria started reading to him from “The Fault In Our Stars,” a best-selling novel about two teenage cancer patients who fall in love.
“The thing about dead people,” Maria said, reading from the book, “the thing is that you sound like a bastard if you don’t romanticize them, but the truth is complicated, I guess. Like, you are familiar with the trope of the stoic and determined cancer victim who heroically fights her cancer with inhuman strength and never complains or stops smiling even at the very end, etcetera?”
“Indeed,” another character was saying. “They are kindhearted and generous souls whose every breath is an inspiration to us all. They’re so strong! We admire them so!”
Even if Ethan wasn’t paying attention, his mom got a kick out of that part.
Using the remote to adjust Ethan’s bed upward on another day in late June, Maria began speaking in the voice of a chipper flight attendant.
“Please keep all hands and legs inside the vehicle at all times. Keep your seat belt on until the captain has turned off the seat belt light,” she said.
“Baby, are you in pain anywhere?” she asked.
“No,” he said.
“Yeah,” he said.
A group of bikers called the Lost Riders stopped by that night to visit. Since learning of Ethan’s illness, they’d helped fundraise for the family and continued to drop by the house every so often to check up on him.
They had names like Wrench and Pop Rock and Boner. They made Ethan an honorary member — the youngest ever — and called him E-Man. Ethan could tell they were coming by the rumbling of their bikes down the road.
Standing at his bedside, they tried to engage him in conversation.
“What’s on your mind?” one woman said. “Can you tell me something? Anything?”
Ethan just looked at her, an oxygen tube resting on his upper lip. A catheter bag hung from the side of his bed.
“He can’t talk a lot, but he can listen,” Maria would tell visitors. “He doesn’t laugh real loud, but he still laughs. He knows what’s going on around him.”
On July 1, his vital signs were still good, but hospice had started giving him morphine.
Maria, who relied on Medicaid to finance Ethan’s care, sat on the couch making a call to the staffing agency to request a nurse for the day shift. A nurse had been helping Ethan for about a month from 7 p.m. to 7 a.m., but there was no one to help Maria during the daytime hours.
“Well, I’d like to have it before he’s dead,” she said to the woman on the phone. “I hate to be an asshole about it, but that’s where I’m at. I don’t think they understand the urgency of what’s going on.”
The woman on the phone talked to a manager, who eventually relented. Maria began to adjust Ethan to change his diaper.
“Second-floor, women’s lingerie,” she joked, using the remote to crank his bed to a higher position.
“Hello, gorgeous,” she said, looking into Ethan’s face. “I know you’re in there.”
The phone rang later, a friend calling to check on Ethan.
“Days,” Maria said. “At the rate he’s going, days. He’s not going to bounce back from this.”
She believed the cannabis had given Ethan an extra six months, but she could tell it wouldn't be much longer.
A ragtag group of friends began to arrive at the house — Denise Simmons, whose teenage son had recently died of a brain tumor; John “Pop Rock” Brubaker, Tony “Wrench” Terranova and his wife, Chris “Mama Bear” Terranova, members of the Lost Riders; Jeanne Nadeau, an Air Force veteran and member of the Patriot Guard; Moriah Barnhart, a Tampa woman whose 3-year-old daughter has brain cancer; and Tonya Stubbs, an old friend of Maria’s who called her a sister.
“I know you’re ready in there,” Maria Maldonado said softly. “You gotta go home. Let your body do its thing. You gotta go home, baby.”
As the nighttime nurse neared the end of a shift on the morning of July 3, a new nurse arrived, a 21-year-old named Eloy Otero. He had been on the job for only two months. He had never watched anyone die.
“It might happen on your shift,” Maria told him. “So if you don’t panic, I won’t panic.”
That day inside the house, it felt as if nothing else were happening in the entire world. Friends and visitors came in and out, speaking in hushed tones. Maria constantly checked Ethan’s oxygen levels. She began playing some of his favorite songs — “All My Exes Live in Texas,” “Brown-Eyed Girl,” “Seven Nation Army” — and curled up next to him in the bed.
“I know you’re ready in there,” she said softly. “You gotta go home. Let your body do its thing. You gotta go home, baby.”
The nurses used a machine to suck the fluid out of his lungs. Maria got up to put on “The Heat,” one of his favorite movies. Ethan kept making a sound like a wet snore.
His father arrived later that day, knocking at the front door. His ex-wife met him outside, the two erupting into another argument.
“You should have been here three days ago!” she yelled. “Come on! You want to see him or not?”
Tito got back in his car and pulled out of the driveway. He came back a few minutes later, when he’d calmed down, and told Ethan he loved him. He stayed a few minutes, then left again.
Just after 6 p.m., the nurses measured Ethan’s respiration rate at 5 percent. They couldn’t find a heartbeat.
Ethan’s hand fell limp over his mother’s body, turning purple. A friend ran outside of the home crying.
“Baby?” Maria said. “Baby?”
The hospice nurse called the time of death at 6:31 p.m., and Maria screamed.
The crowd moved outdoors, lowering an American flag outside the home to half-mast. Inside, Maria could be heard yelling for God.
Ethan’s father’s family began arriving, and Tito went inside to say goodbye. He told Ethan he was proud of his fight, said he was sorry he didn’t get along well with his mother.
When Tito was finished, he started telling another visitor that he had the “true story” of Ethan’s journey, and Maria yelled at him to leave. He hopped into a pickup across the street, his voice piercing the quiet as he yelled obscenities out the window.
Inside, Maria stayed next to Ethan’s body, wishing she could join him in death.
“I love you,” she said, touching him. “I love you so much.”
As the van from the funeral home pulled away with Ethan’s body about an hour later, Maria turned to her other children outside the home.
“You will live your life for him,” she told Ethan’s older brother, Jose. “You only get one shot, you hear me?”
Firecrackers went off in the distance.
“Get as far away as you can for college and make it, OK?” she told Ethan’s older sister, Mio. “I love you.”
She sat on the porch that night talking with her friend Moriah, whose 3-year-old daughter has brain cancer.
“Mourn the loss of your child; don’t mourn the loss of your child’s life,” Maria told her. “My child fucking squeezed in a grownup’s life. You only have so much time to squeeze out.”
On a Saturday a week later, Maria awoke after three hours of sleep and sat in the bathroom, where a cousin began curling her hair.
“I feel weird today,” she said.
The plan was for the Lost Riders to pick her up around 10:30 to head to the funeral home, then the church, then a pool hall called Diamonds Billiards in Cape Coral for a modified Irish wake. Eleven months earlier, the same bar had hosted Ethan’s 12th birthday.
“The enormity of everything hit me yesterday,” Maria said. “Especially with the wake. The same place we celebrated his life, we’re celebrating his death. It’s pretty shitty.”
The Lost Riders arrived soon after to take her away. She tied a red scarf over her head to protect her hair.
“Thank you all for loving my little man,” Maria said.
“Don’t make me cry,” she told them.
At the church, the funeral directors folded an American flag over Ethan’s casket, and Maria began straightening the pins on his dress blues. Inside one of his pockets was a Mickey Mouse pin, as a reminder that he was still a kid. In the background, a slideshow played, with the photos falling into two main categories: Ethan with Maria, and Ethan with pretty girls.
Wearing a black dress with red flowers in her hair, Maria hugged and kissed a long line of visitors. Like Ethan, she had a way of smiling even when she hurt.
In the program was a psalm about the Lord as a refuge and a fortress, but she wavered on God’s existence. Before the diagnosis, she’d been a believer, but now she wasn’t sure. It was annoying to hear people say they were sorry, because the cancer wasn’t their fault. It was painful to hear them say that Ethan was in a better place, because his place was in her arms.
She took the podium early in the service, one of the first speakers to address the 400 some-odd people in attendance.
“Thank you all for loving my little man,” she said.
At the end of the ceremony, a Marine knelt down and handed Maria the folded flag, giving her the appearance of a war widow. The pallbearers carried Ethan outside and into the hearse.
At Diamond, Ethan’s friends and family ordered pitchers of beer and platters of wings and watched his pictures shuffle across a giant projection screen. Some played pool. Others chatted up women. Glasses clinked and waitresses moved around manically, as if not prepared for such a large crowd.
Across the room was the table where Ethan had played pool, the bar stool where he’d sat to open his birthday presents and the jukebox where he’d played the Charlie Daniels Band just 11 months earlier. This was the place they celebrated Ethan turning 12. Now, it was the place they felt the loss of 13, 14, 15 and all the years that would have followed.
Just before 6, a bagpipe player came to the bar and began to play “Amazing Grace.” Under the neon lights, Ethan's friends lifted their drinks and the bagpiper marched back and forth through the room, one foot in front of the other, the song filling the air, and it really was the sweetest sound.
Don't forget to pick up Tuesday's Naples Daily News to view the print display of "Life with Little Man." Get complete coverage of Ethan's story at naplesnews.com/ethansjourney.