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The Honolulu Advertiser
Posted on: Sunday, May 14, 2006

Faithful, even to his final breath

By Lee Cataluna
Advertiser Columnist

Liloa Nakamatsu never once complained as he suffered from cancer, his mother said.

Nakamatsu family

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When young people die after a long illness, we use phrases like "lost his battle with cancer" or "succumbed after a long fight." But in describing what happened to Liloa Nakamatsu, the idea of losing or succumbing doesn't fit. Liloa died, but he was victorious.

His last stay in Queen's went on for nine long months. His auntie said if they had kept a guest book in his hospital room, there would be hundreds of names written in the pages. Liloa was on a ventilator and couldn't talk, but he could smile and he could laugh a soundless laugh and he could lift his left hand in a buoyant "Eh, no worry" shaka. Visiting with him somehow changed people, lifted them up. Liloa made you believe. He showed what real faith and courage looked like.

"He had friends from everywhere," said his mom, Terri. "People would come to his room to see him, and I would ask, 'So, how do you know Liloa?' "

Liloa's long journey started in September 1999. He was just 21 years old when he was diagnosed with testicular cancer, the most common form of cancer in males age 15-35. By the time he was diagnosed, the cancer had metastasized and he had tumors in his abdomen, lungs and brain.

Liloa was treated at The Queen's Medical Center, first with surgery, then radiation, then chemotherapy. His mom took it upon herself to learn everything there was to know about Liloa's condition and the possible treatment. She found Dr. Lawrence Einhorn, best known as Lance Armstrong's doctor, the man credited with finding a cure for testicular cancer.

In March 2000, Liloa and Terri traveled to Indiana for stem cell therapy and chemotherapy supervised by Einhorn. They lived in the American Cancer Society Lodge for two months while Liloa went through the grueling treatment. True to form, Liloa, jokingly called "Johnny Aloha," went around making friends.

May 2005 marked his fifth year without cancer, a milestone after which the chances of recurrence are greatly reduced.

But two months later, his vision started to get blurry. The symptoms quickly got worse. By late July, he was taken by ambulance from his grandmother's Hawai'i Kai home to Queen's, where his long hospitalization began. At first, doctors didn't know if it was radiation lesions from his prior treatment or if the cancer had returned. It turned out that it was a new cancer — perhaps related to the heavy treatment he had received.

As the tumor in his brain grew, Liloa lost more function. He couldn't walk, couldn't breathe on his own, couldn't see out of one eye, couldn't swallow. But he could smile, and he was always smiling.

Doctors told Liloa's parents that they could try chemotherapy to shrink the brain tumor, but it was a long shot. It might not work, and it might make him worse. Terri and Claron Nakamatsu left the decision up to their son. At this point, Liloa was very weak and couldn't speak. He could communicate only by nodding. They asked him if he wanted to give chemotherapy one last try, knowing exactly how hard that would be having gone through it five years before. They told him he didn't have to if he didn't want to. Liloa nodded yes, he wanted to try.

And it worked. The tumor started shrinking. His vision returned. He could move his right arm again. He started to breathe on his own and was slowly weaned off the ventilator. He could talk again.

"When he made his decision to try chemo again, I asked him, 'Liloa, did you talk to God about this?' and he nodded yes," said Terri. "And I asked, 'Did he answer? Did you hear God?!' and he nodded yes. And I was like, 'Wait! I want to know what God told you!' "

Since Liloa couldn't speak, Terri got a spelling board printed with the alphabet. Liloa pointed to letters.

"He spelled out 'B,' 'E,' 'P,' 'A,' 'T,' 'I,' and I go, 'Be patient? Did God tell you to be patient?' And he nodded yes."

And he was patient. He got better.

For one glorious week, Liloa was completely off the ventilator. Each round of chemo made him so sick, but he managed to bounce back.

But then in April, he had a setback.

"His friends would tell me, 'Auntie, he did it the first time. He'll beat this again.' "

But it was not to be. And with his usual grace and faith, Liloa accepted this, too. On May 7 at 4:40 in the morning, with his mom and dad at his side, Liloa slipped away.

Friends and relatives were called. Medical staff came to say goodbye. His room at Queen's was filled with people crying, sharing funny stories, crying some more. Friends covered him with lei of maile, ginger and pua kenikeni.

"It's so sad, so sad and glorious at the same time," Terri said. "He's gone where we all want to be."

His family believes that Liloa endured with such patience so that his family and friends would come to share his faith. He inspired so many people.

Liloa was born on March 6, 1978, on Kaua'i. He was a 1996 graduate of the Kamehameha Schools, president of the dorm council and president of his class alumni association. He earned his associate degree from Kapi'olani Community College and would have graduated with a second degree in graphic arts this spring.

At 9:30 a.m. Saturday, a celebration of Liloa's life will be held at the Breath of Life Christian Church near the Rice shopping center in Lihu'e. A memorial will be held on O'ahu at 1:30 p.m. June 2 at the Kamehameha Schools chapel.

To some, he was the tall, smiling, bald kid behind the checkout counter at Safeway in Manoa, the one little old ladies would run around the counter to hug and kiss as he scanned their groceries, everybody's friend. To his family, he was the witty guy who always had a good one-liner or a hilarious story to share. Little kids followed him around like he was the Pied Piper. Doctors and nurses joined in prayer for him. He was a true believer who never hesitated to talk about his faith, but more than that, who always lived what he believed.

"Not once did he ever, ever complain," says Terri. "Not once did he ever ask, 'Why me?' "

Lee Cataluna's column runs Tuesdays, Fridays and Sundays. Reach her at 535-8172 or lcataluna@honoluluadvertiser.com.