Meet Elias: A Boy’s Battle With Cancer, Part 2

He Fights With Body and Soul

- By Jerry Barca -

Elias Stevens sat with his parents and hospital staff in a room at the Cancer Institute of New Jersey two weeks ago. He listened to his doctor tell him the cancer had spread and the disease will eventually kill him.

“I know whatever happens God is watching over me,” he said later.

The 11-year-old Port Reading boy said the worst part of hearing the prognosis was seeing how sad it made his father, Curt Hamilton.

Curt left the room, and, doubled over in the hallway, he sobbed. “I just don’t want to hear this again.”

Elias played with his little brother and sister after he left the Cancer Institute that night. He went to school the next day.

“If you just crawl under your covers, it won’t make you feel better. You just have to live with it, no matter what circumstances,” he said.

When Elias was diagnosed with bone cancer 2 1/2 years ago doctors gave him a 25 percent chance to live. Chemotherapy led to a month-long medically induced coma that doctors thought would kill him. Elias survived.

The disease took his thigh bone, knee and hip. But a year ago, the cancer was gone. Then in July 2004 the disease resurfaced; it had spread to his lungs.

The cancer has continued to grow inside him despite the treatments he has received, said his primary oncologist, April Sorrell.

The current prognosis belies Elias’ spirit. It doesn’t match his smile or the body people see.

Elias has been walking without crutches lately. He has a new-found enthusiasm for school. He has been reading Harry Potter books.

He said he is not ready to die. And when he is, he said he will know ahead of time. He calls his approach to the disease his epic battle with cancer.

“I’m not going to quit. I’m going to go fight,” he said.

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Elias and his mother, Teresa Stevens-Hamilton, walked down the lead-walled halls of the radiology department at Robert Wood Johnson University Hospital in New Brunswick.

They have navigated the path of blue-gray walls countless times since Elias was diagnosed with osteosarcoma — bone cancer. They used to daydream about running away from the battery of exams, and today was no different.

“What if we did? What if, we just ran away?” Teresa asked Elias, smiling as her eyes shot back toward the exit.

Elias kept pressing his crutches to the floor, moving forward. He had been feeling a stiffness in his left forearm for about a week, but he had no worries about this hospital visit.

“I just want to get it over with,” he said.

He and Teresa sat in chairs lined against a back hallway wall, waiting to be called.

In the X-ray room two technicians took pictures of Elias’ right leg — the side with the titanium rod for a femur, an artificial hinge for a knee, and a plastic hip.

Elias laid on his back on the X-ray table, staring at the ceiling. When the machine made the popping picture-taking sound, Teresa and the two technicians stood behind a wall, leaving Elias alone in the room.

Digital images of the prosthetic showed up on computer monitors in seconds. It looked like a screw drilling down into a wing nut and then a saucer.

Elias lay silent on the table. He didn’t see the doctor and a half-dozen techs staring at the metal that had become his femur. He didn’t hear them talk about it; they had “never seen a complete replacement,” one said.

But for Elias, this was routine.

“It’s nothing I haven’t done before,” he said.

“You smell that? You’ve been in a hospital enough, you know that smell. It’s a bad smell,” Elias said. “It smells like rotten baby powder.”

Elias was in University Hospital in Newark two months ago for surgery to lengthen the rod in his right leg. His left leg had grown two inches longer than his right. The procedure would let him stand on even footing.

Elias cried himself to sleep the night before. During the drive to the hospital, he read the 23rd Psalm, the one about walking through the valley of darkness and not fearing evil because God is with you.

His smile flinched to a frown as he changed into a hospital gown. He sat in a wheelchair outside the operating room. Forehead-to-forehead, Elias and his mother prayed before he received anesthesia.

“I don’t regret having cancer,” he told his mother in the midst of prayers and nervousness.

The limb lengthening was without an incision. In lay terms, the surgeon, Joseph Benevenia, described it as a magnet pulling the metallic rod toward Elias’ ankle.

Elias woke to a cacophony of beeping monitors in a 16-bed recovery room. Tears streamed out of his eyes.

“I don’t want to be in pain,” he said grabbing the bed rail.

He rated his pain as an 11 on a scale of 10. Morphine shot through an IV tube and into his body. He had two Percocet pills, and his mother spoon-fed him mashed potatoes with black pepper and brown gravy.

He left the hospital later that day. At home, Elias said grace over the lasagna his father made. He thanked God for being surrounded by people who care and support him.

Teresa had her eyes in her leather-bound Bible as she and Elias waited in the radiology hallway.

She read part of Isaiah 53 and Psalm 103:3 about how God heals all diseases.

She glanced to her left and saw a mother, a father and their daughter, no older than 3, dressed in pink with an IV needle connected to her arm.

“They’ve been where we were,” Teresa whispered. “I can just tell.”

Elias and Teresa waited and waited.

“Being here is sort of like being in prison,” Elias said. “I have to go through all the tests to see if I’m OK, and I know I’m OK. And, I really don’t want to be here.”

The wait ended when Elias was called to the bone-scan room.

He sat in a chair, his silver cross and “I (heart) Jesus” lanyard draped around his neck. He looked to his left and offered his right arm for an injection, a drop of radioactive liquid.

Back in their hallway chairs, Elias and Teresa waited to be called for a CAT scan of his lungs.

Teresa didn’t mind waiting. To her, it was a good thing.

“We’re not urgent. We came a long way not to be urgent,” she said.

Elias went to physical therapy the day after the surgery to lengthen his right leg.

Pretty soon his walking improved. He stopped grunting with each step. His back was straight, instead of hunched over. The tears and fears disappeared.

He walked around the fitness center at Robert Wood Johnson University Hospital twice in less time than it used to take him to finish one lap.

“It floored me,” said his physical therapist Laura Glick.

Glick said there was no single reason Elias improved so much. She thinks it is a combination of him becoming stronger and more confident, his father pushing him through exercises at home, and him receiving attention after a newspaper article was published about his battle with cancer.

Benevenia said the surgery helped Elias balance. The doctor said he is progressing better than most patients.

“They’re a God-centered family, and that keeps them focused,” Benevenia said. “Their attitude and courage is an inspiration.”

Just being able to walk at physical therapy felt great to Elias.

“I knew I was going to do it. I just didn’t know when,” he said. “If I believe, I can just keep going.”

He gave credit to his father for the improved gait.

“All I want is for him to walk again. I push him, but I know he can do it,” Curt said.

Brad Pitt would not have received the welcome Elias got when the automatic doors opened to the oncology unit at the Bristol-Myers Squibb Children’s Hospital.

Nurses and doctors applauded and lined up to hug the boy who beat death and had become a young man.

“Holy moly,” said one nurse.

“I missed you,” said another.

“Oh, you’ve grown so much,” added one more.

In between exams, Elias and Teresa walked over to the children’s hospital, which is connected to Robert Wood Johnson University Hospital. They wanted to say hello to the people who took care of Elias for four months when he underwent chemotherapy and was put in a coma.

Elias and Teresa took the elevator to the second floor to visit their friends. When they got off, the little girl in pink and her parents from the radiology waiting area were getting on.

“That’s how we used to look,” Teresa said.

In the unit, the nurses asked how Elias’ little brother and sister — Al and Destyni Hamilton — were doing. They remember how Destyni used to stand on a chair and scream “What are you doing to my brother? Don’t hurt my brother,” when they came into Elias’ room.

The staffers used to fill syringes with water and squirt Elias to keep his spirits up. They visited him while he lay in a coma.

Jen Savarese, the unit secretary, used to tease Elias about sneaking a kiss on him. She did eventually. She kissed his cheek when he was in a coma, and his blood pressure jumped.

“He’s just doing so well,” she said as she started to cry. “He has an old soul. He’s just really strong.”

Elias smiled throughout the reunion. “They helped me any way they could, and they still care about me,” he said.

Teresa wore a smile when she left the unit.

“It’s weird. I know it shouldn’t, but it feels like coming home,” she said.

Elias put his bag and crutches down in the nurse’s office at Fords Middle School about a month ago.

He took four steps toward his school aide, Shamila Seepersad, who was open-mouthed at the sight before her.

“This is for you Miss S.,” he said, giving her a thumbs up.

“It was like watching your own child take their first steps,” said Miss S. as her eyes filled with tears.

Elias had been apathetic toward school. He slept through parts of the day and routinely missed math class.

But his attitude changed. Math has become one of his favorite subjects now. He left his wheelchair and walked the halls on one crutch. He began using the boys’ bathroom rather than the one in the nurse’s office.

The week before standardized tests, he spent an hour a night on the telephone with Miss. S. studying.

Elias said his parents told him if he did not know math, he would miss out on things in life. “I don’t want to miss out on anything,” he said.

His reading, writing and math teacher Stacy Forster had intercepted notes he had been passing with girls.

“He’s more lively,” she said. “Now, he’s got spunk. He gets annoyed if he doesn’t do as well as he wants. And that’s good to be annoyed. It’s an emotion.”

Elias lay on yet another table for his bone scan.

This was his eighth bone scan in about two years. He slept most of the time while the body-sized vicelike set of cameras scanned him from head to toe, coming within a half-inch of his skin.

Teresa sat in a chair studying her notebook a couple feet away.

She was taking classes at night to become a clinical medical assistant. With grants, the course cost $1,300.

She has not worked since Elias was diagnosed. The family of five has gotten by on Curt’s salary with the Sheet Metal Workers Union Local 25 in Carlstadt. He could make anywhere from $35,000 to $65,000 in a year. But he spent more than two months unemployed between January and April.

Teresa did not like leaving the house three evenings a week.

“I miss my babies,” she said. “It’s for their future as well as mine. Hopefully they’ll get the message. They’ll have more things, and I’ll have a better job because I’ll be more marketable. I hope I’m not being selfish. Sometimes I think I am.”

The bone scan usually took 45 minutes, but this lasted about two hours.

With the scan finished, Elias and Teresa battled each other in a series of rock-paper-scissor matches as they waited to be dismissed.

The children at Fords Middle School found out Elias’ cancer had returned when they read about it in the newspaper article about him.

“Elias is a good friend,” said classmate J. Siman. “He doesn’t make fun of anyone . . . and (the cancer) I don’t see it.”

The 12-year-old Fords boy prays for Elias every day, and he made him a cross in metal shop.

“I wouldn’t give it to just anybody,” J. said.

Even though Elias already wears a silver cross, he put on J.’s, too.

“I like it. It’s awesome,” Elias said. “He’s really my friend.”

The cross beam is slanted, and it hangs on a string, but J. appreciated seeing it on Elias.

“It’s nice he would wear it. I gave my mom a bracelet, and she never wore it,” he said.

Elias knew something was wrong when the doctor wanted to see both of his parents.

The appointment with Dr. Sorrell had been made before they started the day of exams.

Curt picked up Destyni and Al from school and brought them to the Cancer Institute. He arrived thinking he would relieve Teresa so she could head to her class. But that wasn’t to be.

Teresa and Curt went in a private room with Sorrell and a counselor.

Destyni and Al played board games in the waiting area with a girl who had just received chemotherapy.

Elias removed himself from the game-playing table and sat alone playing a Superdog computer video game.

“Instead of crying my eyes out, I went and played with Krypto,” he said.

Elias was called into the room with his parents. He heard the news.

The cancer had spread to his liver, his buttocks and it had grown in his lungs. The tumor in his right lung is causing an air leak, and part of his lung is collapsed. Doctors would not set a timetable for his life.

Teresa and Curt cried. Elias got teary-eyed, but didn’t weep.

“I’m OK with it,” he said.

Julian Garcia and Elias wrote out rules to their friendship. The top three are no lying, no rumor spreading, and tell each other everything.

Julian thought the children in school talking about Elias’ cancer were lying. But then Julian read it in the newspaper, too.

He asked Elias why he never said anything.

“I wanted him to look at me like his best friend who is going to be with him forever,” Elias said.

“He fought off the leg cancer, so the lung cancer shouldn’t be that bad,” Julian said. “Now, I have to wait even longer to play with him.”

Julian told Elias the world would not be at peace if he died.

“We need people like you to stay in the world,” Julian said.

Elias looked out the window on the drive home from the Cancer Institute. Curt asked him what he was thinking about.

“That house,” Elias said.

“OK, now, deep, deep, deep down what are you thinking about?” Curt asked.

“I’m thinking about what heaven is like.” Elias said.

Meet Elias: A Boy’s Battle with Cancer – an occasional series by Jerry Barca that originally appeared in the Home News Tribune in 2005.

Part 1
Following Faith’s Footsteps

SIDEBARS:
Cancer Attacks the Wallet, Too
Managing Chemo Cocktails
Bone Cancer in Children

Part 2
He Fights With Body and Soul

 

Part 3

Elias’ Courageous Fight Ends