Life with Little Man: As they said he was dying, Ethan Arbelo wasn't done living (Part 2 of 3)

Midway through his French toast last June, Ethan Arbelo hurried to the bathroom and shut the door.

Soon after, his mother heard him faintly calling for her. She got up from the table and went into the bathroom, where a spray of blood covered the toilet.

Ethan waits for the oncologist with his mom shortly after a radiologist delivered news from an MRI that new tumors were growing in his brain. (Dania Maxwell/Staff)

 

“Where’s the closest emergency room?” she shouted. Ethan, who had finished vomiting, held a tissue to his face to stop his nosebleed. They were in California, 2,600 miles from their home in Lehigh Acres.

A friend called 911 and minutes later, paramedics parked their engine outside and headed over to investigate.

“This is Ethan, he’s 11,” one of them said, briefing a colleague. “He’s got, uh, it’s basically brain cancer.”

“It’s called anaplastic astrocytoma,” Ethan said.

The paramedics loaded mother and son into the ambulance and headed to the Tri-City Medical Center. In the emergency room, a nurse began to fill out paperwork.

“Where are you visiting from?” she asked.

Ethan plays with the headgear while riding in an assault vehicle after being made an honorary Marine "Becoming a Marine, makes you feel legendary," Ethan said. (Dania Maxwell/Staff)

“Florida,” said Maria, 41. “He’s on his bucket list.”

Another nurse warned Ethan about a needle, but he shrugged her off.

“That’s the difference between me and most kids. Most kids are like noooo noooo,” he said.

Maria called Ethan’s doctor back in St. Petersburg to make her aware. The emergency room doctor cleared Ethan to go home, but he insisted on heading to the beach first.

Peeling his shirt off, he ran out onto the sand and into the cool Pacific water. Ethan and two other kids took turns burying each other in the sand.

His mom stood up the beach watching, taking in the salty California air.

“You’d never know that two hours ago he was bleeding,” she said.

Click here to view a large map of Ethan's road trip »

After his diagnosis in 2012, Ethan started making a list of experiences he wanted to have before he died. He was certain he wasn’t actually dying, but figured it didn’t hurt to check off a few items either way.

With his help, his mother pulled together an itinerary for a cross-country road trip so Ethan could see faraway places. They left their home in June 2013, picking up Lea Sellwood, a 9-year-old with leukemia they knew from All Children’s Hospital in St. Petersburg.

Ethan Arbelo, then 11, runs along the beach an hour after leaving the hospital after he vomited and had a nosebleed that would not coagulate on June 26, 2013, in Carlsbad, Calif. (Dania Maxwell/Staff)

In Alabama, they met up with one of Maria’s friends from her Marine Corps days, visited a waterfall near an Army base and sang “Ice Ice Baby” on the way to a ghost-hunting excursion. Next was New Orleans, where they ate po’boys and shrimp on Bourbon Street, and Houston, where they went on a local radio program to talk about the need for funding for pediatric cancer.

■  Watch Ethan's video diary: "I'm so silly"

After a quick visit with Ethan’s Uncle Bubba in Lubbock, Texas, they made their way to New Mexico to surprise Ethan’s grandfather.

Jose Maldonado greeted his surprise visitors shirtless, dressed in a pair of black shorts and shearling house slippers. The 74-year-old invited them inside and began flipping through the channels as Maria pulled out old photo albums.

Ethan says goodbye to his grandfather, Jose Maldonado, after his mom, Maria Maldonado, right, surprised him with a visit June 24, 2013 in Tucucmari, N.M. (Dania Maxwell/Staff)

“You don’t know when you’re going to die,” Jose said eventually. “People say you’re going to die, then you don’t, you know?”

The next day, as they kissed goodbye, Maria began to cry.

“I’ll be back soon. I won’t wait five years next time,” she said.

“I might not be here next time. But if I’m going to die, I’ll call you. ‘Maria, I’m dead!’ you know,” her father joked.

He turned to his grandson.

“I’ll see you later. Try not to think about nothing, OK?” he said. “Life is about nothing but the choices you make.”

 

Click here to watch Ethan's video diaries »

Stopped for the night in Holbrook, Arizona, Maria gave Ethan some anxiety medicine to help him sleep. Dinner was late, around 9 p.m., at a Denny’s across the motel parking lot.

Ethan ordered a Junior Grand Slam, then sunk into the vinyl booth for a nap. His mom put down her silverware and started crying. He was 11. She hated seeing him sedated.

“Are you OK?” the waitress asked.

“He has cancer,” Maria said. “He’s tuckered out. We’re on his bucket list.”

She got the check and took Ethan back to the motel. Maria and Lea got on either side of him and helped him up the stairs and into bed.

“God makes miracles,” Ethan insisted.

Outside, Maria puffed on a Newport and choked back tears.

“I hate it because I feel like that’s not my son,” she said. “And I really want to finish the bucket list, because I don’t want it to be undone. I don’t want to get home and find out that something else is wrong and he hasn’t finished it.

“I don’t want to push him too hard and it’s just, the money’s running out, and it’s just like ... it’s just a lot,” she said.

She finished the cigarette.

“I’m determined to do it. I’m just going to finish my updates and go get some sleep,” she said, slipping back into Room 239.

She titled her blog post “Today’s hard decision” and began to write: “It was a really rough day today.”

■  Watch Ethan's video diary: "I love you"

In the car the next day, Ethan asked to call his dad.

“Always have faith. Faith will move a mountain,” Tito Arbelo told his son.

“I love you,” Ethan said. “I miss you.”

Ethan plays a game of pool with his dad Jose Tito Arbelo on his 12th birthday at Diamond Billiards on Aug. 10, 2013. (Dania Maxwell/Staff)

They took a pit stop at the Meteor Crater, about 40 miles east of Flagstaff, Arizona. After purchasing tickets, they walked the edge of the mile-wide crater listening to tour guide Derek spew off facts about the crater’s age (50,000 years old) and size (2.4 miles in circumference).

“This is a beautiful view, ain’t it?” Ethan said. “B-E-A-U-tiful.”

Before they left, Maria asked if he wanted to go up to the observation deck.

“I’m not going up there,” he said. “My pits are moist.”

After three weeks on the road, with stops in New Mexico, Oklahoma and Arkansas on the way back from California, they pulled into their driveway in Lehigh Acres on July 5.

■  Watch Ethan's video diary: "It's the Sunshine State"

At the hospital for a post- road trip checkup later that month, the nurse weighed Ethan at 127 pounds, about 12 pounds heavier than the last visit.

“Mommy put on some too,” Maria joked.

“It’s not a good vacation if you don’t,” the nurse said.

“How do you tell a Marine to stop fighting?” - Maria Maldonado

Soon after, Ethan’s pediatric oncologist, Dr. Stacie Stapleton, came in to see him. By now, he knew the sound of her heels clicking down the hallway and could tell when she was approaching.

They discussed new combinations of chemotherapy Ethan might try. Maybe CCNU and temozolomide?

“There were several patients that were on that that had fairly decent results,” the doctor said.

“All right, so what do you think? Take some oral chemo by mouth?” Maria asked Ethan.

He said nothing.

“You need it, baby,” she coaxed.

“I’ll do it,” he said quietly.

Maria puts on Ethan's shoes as he looks at his homecoming date, Lydianna Mize, on Oct. 12, 2013, in St. Petersburg. (Dania Maxwell/Staff)


Later that fall, Ethan picked out a black tuxedo with pink accents for his first homecoming dance. He asked Lydianna Mize, the 10-year-old sister of his friend Morgan, another cancer kid, to be his date.

The dance, held on a Saturday in mid-October, was the first of its kind at All Children’s, an event dubbed “Evening Under the Stars” for pediatric patients. Almost everything was donated: Chick-fil-A sandwiches, ballgowns, a twinkly carriage parked outside to take pictures with.

Ethan and his date walked underneath an arch of balloons into the dance room. A girl in a wheelchair wore a tiara atop a hairless head. Another kid sported a gorilla mask. The room smelled overwhelmingly of cookies.

The kids did the “Cupid Shuffle” and the “Wobble” and obliged when asked to film a “Harlem Shake” video. In between dances, Ethan sat on the stage. An older teenager in a pinstriped suit said hi.

“He has what I have,” Ethan said. “Brain cancer.”

Around 10 p.m., Ethan and his date met his mom in the lobby. One of the other moms told Ethan he looked handsome.

“We gotta go home,” Maria told her, “so he can take his chemo.”

Their duplex was sparsely decorated -- not really the priority -- but family photos were given prominent wall space. Hung on the kitchen wall as soon as you walked into their duplex was a boot camp portrait of a young Maria in Marine Corps dress blues. To the right of her photo was the same type of portrait of her brother.

Maria Maldonado gives Ethan Arbelo, 12, one last hug before he heads for an MRI on November, 20, 2013, at All Children's Hospital in St. Petersburg. (Dania Maxwell/Staff)

She called it the “Wall of Fame.” Every good Marine had one. Ethan thought he might end up on the wall one day, too.

“I want to be a Marine,” he said. “If I become a Marine, then instead of retiring I want to become a drill instructor, always yelling at people.”

When Ethan was diagnosed, Maria assumed that role.

“She treats me like she’s my drill instructor and I’m her recruit,” he said. Marines weren’t allowed to die without permission, without “the order.”

That fall, she finalized plans to make him an Honorary Marine, an honor bestowed to fewer than 100 people since it became a formal title in 1992. She called her plan Operation Devil Pup, a spin on the “devil dog” nickname for Marines.

■  Watch Ethan's video diary: "Today was a good day"

On Halloween morning, Maria drove her son to the 4th Assault Amphibian Battalion Headquarters in Tampa, just outside the Marine Central Command at Air Force Base MacDill.

Ethan, at first a little confused, realized he was the guest of honor.

“Making you an Honorary Marine,” said Lt. Gen. Robert B. Neller, the highest-ranking official on base, “is our way of recognizing that you’re resilient, you’re faithful, you never quit. You find a way to overcome.”

The ceremony was short. Someone asked Ethan if he wanted to shoot a grenade launcher, which seemed more fun anyway.

“Always have faith. Faith will move a mountain,” Tito Arbelo told his son.

He turned his attention to an amphibious assault vehicle.

“Will I get to drive it?” Ethan asked. “I really want to drive it.”

They plopped a helmet onto his head, helped him into the back of the vehicle and took him for a spin.

“See? Now you’re a real Marine. You sweated with ‘em,” his mom said.

The ceremony was for him but it was also for her. Maria remembered walking across the parade deck for her own graduation, and how everything she had been through -- her entire crappy childhood, her years in high school -- how at that moment, everything was somehow finally worth it.

“When you walk across that parade deck and you do eyes right, and you see the person that means the most to you looking back and the pride in their face, you’re just like, yeah,” she said later. “And I wanted that for my children.

As Ethan Arbelo starts to accept the prognosis of his disease he writes a note in his journal before bedtime on July 30, 2013, in Lehigh Acres. (Dania Maxwell/Staff)


“The only one that really had the balls enough to do it was Ethan. And I feel robbed. Even with him having Honorary Marine status, I feel robbed. ‘Cause I want to know what my dad felt. And I only got to feel a portion of that.”

The next month, at the end of November, Ethan was due for another MRI. Maria knew his tumors must be doing work because of the palsy, the way he couldn’t quite move his left hand like he wanted to.

It took only a few hours to get the news from Dr. Joseph Potthast, a pediatric radiologist. The tumors were growing, now taking over his spine.

After lunch, they met with Ethan’s oncologist.

“What do think about doing chemo?” Dr. Stapleton asked.

“I say let’s give it a try,” Ethan said.

“OK,” she said. “What if it makes you feel bad?”

“Keep going,” he said. The doctor asked Maria if they could speak privately.

“Only God knows,” Dr. Stapleton said. “But I would say with that amount of progression ... you know, his poor little brain. It’s almost more tumor than brain, at this point.”

“How do you tell a Marine to stop fighting?” Maria asked.

Watch Ethan's video diary: "I wish cancer got cancer and died"

“You have done everything,” Dr. Stapleton said. “You have done your homework, you have done your research, you have reached out across the country to me, you’ve brought me papers, you’ve emailed me ... you have done, you have done everything. You couldn’t have possibly done any more as far as trying to find a way to cure him. The problem is -- it’s we, as a medical community, don’t have the ability to cure this tumor.”

They talked for a while and decided it was time to approach Ethan.

The two walked into the room where Ethan sat, reading from a book of jokes called “Monkey Farts.”

“Dr. Stapleton said it’s time to issue the order,” his mother said.

Maria gives Ethan a hug after giving him 'the order' to die with her permission on Nov. 20, 2013, in St. Petersburg. (Dania Maxwell/Staff)

“No. It’s not,” Ethan said.

“She said the chemo won’t help ...”

“It’s not time yet.”

“ ... that it’s growing too fast.”

“It’s not time.”

“I am afraid,” she said, crying.

“Don’t cry,” he said. “Dr. Stapleton isn’t my commanding officer. You are.”

“She’s God’s messenger,” Maria said.

“God makes miracles,” he insisted.

He talked to his dad on the phone on the way back, said he was feeling good.

“It’d be nice if you came to see me though,” he said. “‘Cause I got Battlefield 4 ... OK ... All right ... Love you, too.”

They made it back to Lehigh around 7:45 p.m. Ethan said his prayers and went to sleep.

------

Daily News reporter Jessica Lipscomb can be reached at jelipscomb@naplesnews.com. Daily News photographer Dania Maxwell can be reached at dania.maxwell@naplesnews.com.

------

RELATED STORIES

------

 

SHARE THIS: Facebook | Twitter | Google+

 

Print this article Back to Top