salina2

These three remain:
Faith, hope and love

Marquette family learns
to live with terminal cancer
in two family members

By KARA RHODES
The Salina Journal

MARQUETTE -- Brion and Nancy Larson snapped thousands of puzzle pieces into place while passing

months in the oncology ward at Salina Regional Health Center while their oldest son fought battle after battle with cancer.

While they completed dozens of puzzles during 24-year-old Greg's four months in the hospital, every time it appeared the puzzle pieces of their lives were nearly all in order, an unseen hand would violently sweep the completed portions to the floor.

In 1999, Greg's dad, Brion, was diagnosed with cancer. Then the disease went into remission for a while. The latest blow to this ravaged family: Brion's cancer has returned. Doctors say he has maybe only 18 months to live if he chooses not to undergo chemotherapy. With bad memories of his first bout With chemo and no guarantee it's going to add any time or quality to his life , the whole family is struggling with the issue of whether he should undergo treatment or just let the cancer take its course.

Meanwhile, Brion has been racked with pain from the disease. He has a morphine pump imbedded in his side that feeds a set amount of morphine throughout the day. But the pain is not under control and sometimes leaves him writhing on the floor. Once, while walking back to the Morrison House where the family was staying while Greg was hospitalized, he was in such pain and so numb he couldn't move his arms and had to ring the doorbell with his nose.

Because Brion's business was the family's sole source of income, the cancer has been disastrous not only for his body, but for his entire family. They owned a business in downtown Marquette, Larson Organ Co., building pipe organs for churches. But the cancer and intense pain have made physical labor impossible. The family depends on Medicaid to pay for Greg's and Brion's sizable medical bills.

Greg diagnosed at 17
It's not known how much longer Greg has to live. Greg, at 17, was diagnosed with colon cancer. He beat that and had several. healthy years before being diagnosed with stomach cancer last year. Doctors thought he had it beat, but he didn't.

Now Greg's health is deteriorating quickly as his body, which has been getting food only through a tube since September, is ravaged by the disease and its side effects.

Greg, after four months on the oncology ward, is at home now in Marquette. He's most Comfortable on the. living room couch, where he is surrounded by his mother's collection of angels. It also keeps him surrounded by family, and he doesn't like to be alone, his mother said.

While he is dealing with cancer,. Greg's three siblings still have sleep-overs, argue with their parents, watch movies and play video games. They lead their lives as normally as possible, though 15-year-old Robbie, instead of summer camp, will be thoroughly tested for cancer this summer in light of what has happened to his father and brother.

Learning to die

Greg's mother says her son has accepted his cancer as well as he can, but, as anyone would be, seems depressed that at the age of 24, his life is almost over. Just months ago, interviewed for a story about his recovery, he was upbeat -- talking about his future, his past, his triumph over cancer. Now, he ignores questions and rarely has the energy to rise.

Lesli Schrader, the clinical coordinator with Hospice of Salina, said Greg's way of dealing with death may or may not change as his level of acceptance and anger change.

"It's a very different situation when you're young," she said. "There aren't any rights or wrongs out there. Each person has to make it right with themselves and their own families.''

When Greg's cancer was deemed terminal, it took a while for him to realize it, his parents said. He was in denial, but one day, shortly after exploratory surgery to make sure that, in fact, nothing could be done, he understood.
"The real epiphany for him was two or three days after his surgery," Brion said. "He kept saying, 'You mean the cancer's still there? Why is it still there?' "I think he realized right then it was over."

Nothing is as exhausting as thinking of long, painful days to come.
That was evident during Greg's last day at the hospital. Nurses and other employees who had gotten to know him during his months there threw a going-away party in his hospital room, complete with balloons and confetti.

Greg, though, seemed to know he was leaving the hospital because there was no chance of curing him. He could barely smile and just seemed to want to crawl back into the safety of his bed while his parents shot a video of the party and nurses laughed and congratulated him for finally being able to leave.

Taking a toll on mom

Nancy, too, is much more tired than she was just several months ago - mentally, physically and spiritually -- from picking up the puzzle pieces of her family members' lives.

There are no neat corners on the Larson family puzzle, and Nancy likes neat corners.

"I come in here at night just to make sure he's still breathing,'' she said.

Before Greg came home from the hospital, she would go into his room at night.
"It smells like him," she said. "I wondered if he'd ever come home to his room again."
He has, but she and Brion wonder for what purpose.

"It's hard to look at him and watch him go through this," Brion said.

"I ache inside watching him," Nancy said.

She tries to be strong for Greg and Brion but is more and more overwhelmed and emotionally tired as the weeks pass.

While exhausting now, Schrader said, in the long run helping Brion and Greg through their cancer may be positive for Nancy and her healthy kids, because those who can offer hands-on care for terminally ill family members often begin to heal emotionally more quickly after the eventual death.

Nancy was frightened about Greg coming home from the safe cocoon of the hospital where he had been wrapped for so long.

"He was trying to take a shower and was vomiting -- he just got overwhelmed," Nancy said of one bad time during their last days there. "I told him I wouldn't let anything bad happen to him, but we both know I can't stop it. We both cried."

Questions arise; faith stays

Brion and Nancy claim they have not questioned their faith in God during these years of chaos, but Brion does say he has some issues to deal with.

"I hope when I reach heaven, God's going to have answers for me," he said.
They have lots of questions,

and they ask them searchingly: Is there a lesson here? What's the reason?
Are we supposed to learn?

Are we supposed to be setting an example?

Back when Greg was still expecting to get better, he was asked what he thought God wanted him to learn from his cancer,

"Maybe it's just to survive," he said then. Ask him again today, and he is silent.

Schrader said not giving up hope is important because it's terribly easy to become overwhelmed with the depression of oncoming death.

"We always hope," Schrader said. 'The focus may be different -- previously it was on treatment and cures, and now maybe we're hoping for a good day or a good week andjust want to make today the 'very best we can.

"Quality becomes the issue rather than quantity."

Web of support

Brion said his family has wittingly become an example. He sends periodic updates to friends through e-mail. Those have been passed around worldwide, he said, and the family has received hundreds of e-marls and letters in support. Because of the support, Brion has set up a Web site about his family at http//geocities.com/ brion55/

"They all talk about what an inspiration we are," he said, "I don't see it. They say they've never seen such faith in the face of such crisis -- from this side of the story, it doesn't seem that way."

While most of Brion's e'mails have been positive, Shrader said friends and distant family of terminally ill patients often believe immediate family members are reacting inappropriately to a long-term illness and death. That's inappropriate, she said, because no family has the same emotions, memories or social interactions.

"It's important that families are allowed to deal with it in their own ways and in their own time," she said. "Communication is a real key. If you can be open and honest, not just with each other but with the person who is dying and he ready to listen when they're ready to talk -- that's what's important."

'Are you ever ready?'

Nancy tries to stay strong and look for the benefits of the situation.

"I'm thankful for the time we have," she said. "We'll do our best to spend it to the fullest. So when the time comes we're ready."

But then she paused, and her eyes drifted away from the table.
"Are you ever ready?"

While she says her faith hasn't swayed, she is sometimes angry with God.

"I'm tired of having to deal with all this," she said. "I'm-losing my oldest son and husband at the same time."
Brion, when Nancy's gone from the room, voices concern about her.

There's nowhere in the Bible where it says God doesn't give you more than you can handle, he wrote in a recent e-mail.

"It's starting to get to her now," he said later. "There's only so much one person can take."

Not taking things for granted

For Brion, his son's tragedy is much greater than his own.

His biggest regret, he said, is not about himself but about the fact that Greg won't live to be a husband and father.

"He would have made a great dad," he said. "I would have loved to have seen him raise a family."

Meanwhile, Brion has realized the value of being a father and husband and doesn't take a day for granted anymore.

It's much too easy, he said, to put off completing the small detailed parts of a puzzle that are much more difficult. But it's those pieces that often give a puzzle's picture its overall rhythm and beauty. He has found that true in his own life as well. He can no longer put off the important things.

"I'm very expressive now," Brion said. "There's kisses and hugs and 'I love. yous.' It's a mistake most Parents make -- not sayingthat every day."