AIDS Toll Is All in the Family as 8 From Small Iowa Town Die

For so long, Loras Goedken had buoyed his family with his determination in the face of AIDS. But now, as his loved ones massaged his legs and held his hands, he breathed fitfully.

His mother, Mary, kissed him and told him again and again that she loved him.

His son-in-law, Jeff Pike, reassured him. “We’re all here with you,” Pike said. “It’s OK. It’s OK to go.”

He died at age 52 on Aug. 24, and a singular family nightmare ended.

Loras was not the first of the Goedkens to die of AIDS--the first was his brother, Ernie. And then there were the others: J.J. and Carl. Dennis, his wife Karen and their 4-month-old son Clayton. Loras’ wife Jan.

Altogether, eight Goedkens died. In the two decades of this epidemic, authorities know of no other American family that has suffered so much.

“I guess I couldn’t say for a minute it’s all over,” says the surviving brother, Steve. “Maybe the death and the dying [are] over. Certainly the emotions of missing people . . . time helps heal that, but you still miss them very much.

“Life goes on, but it goes on differently. I guess I don’t see putting a closure to it because it’s not over. It’ll never be over for us.”

Once, there were 11 brothers and sisters. Seven of them were boys, and all but Steve carried the family curse: hemophilia. The youngest died in 1971 at 11 of complications from the disease.

“I used to call us the ‘Crisis of the Week’ family,” says Judy Kerby of Jal, N.M., the ninth Goedken sibling.

With 23 years separating the oldest and youngest children, the far-flung family was together just once, in 1965. But the children took care of one another, even when those in pain kept their suffering to themselves.

Steve, 48, is the seventh Goedken child, the only brother free of hemophilia. As a child he would lie in the bedroom he shared with his brothers and listen to them cry.

“I remember, particularly at night, how they would bury their head in the pillow because they were in so much pain,” Steve says.

“If you went in to try to help them at night, they always wanted their joints rubbed or their hair,” says Clare, the fourth child. “They just wanted to be touched and know you were here. I think we became very close in that respect, that touch was always there.”

Mary, a nurse’s assistant at a local hospital, often drove her boys an hour south to Iowa City for blood transfusions after returning from work at 11 p.m.

“There were a lot of weeks when we didn’t have everyone at the dinner table, a lot of times at the holidays when someone was in the hospital,” Judy says. “I think I learned to be a nurse at a very early age.”

Still, the boys tried to lead normal lives. Theirs was a religious, Roman Catholic family, hard-working and unassuming; their tiny hometown, Monticello, is nestled among red barns, green fields and big sky.

Ernie, the third child, organized secret rodeos where their parents couldn’t see them bruise from the rough riding. His older brother J.J., skillful with wood and electric saws, built a motor scooter for himself.

“The doctors would tell him he was crazy,” Steve says. “It was his way of fitting in.”

Like other hemophiliacs, the Goedkens began using clotting factor products that became available in the 1970s to stem bleeding. But then, word spread that these products had been contaminated with the AIDS virus.

Two sisters living in Australia--Janet Lovett, the eldest, and Mary Kearny--talked it over. “We wondered about the boys,” says Lovett. “But we didn’t want to set an alarm that wasn’t really necessary.”

When the family gathered in February 1986 to celebrate Mary and Vince Goedken’s 50th wedding anniversary, 46-year-old Ernie was frail. And Carl, 35, seemed out of sorts.

Neither man ever said he had AIDS. “They didn’t want to bother other people with their worries, although we in the family would have liked to have been bothered with it,” Mary Kearny says.

But when Ernie died, 13 months later, a mesh screen covered the body and flowers were arranged to prevent mourners from coming too close.

That same year, Carl developed dementia--a common effect of AIDS. He sprayed lighter fluid in the fireplace of his house in Texas and burned it down, and was placed in a mental hospital.

“I hadn’t been told he was HIV,” Janet says. “The nurses asked me to put on rubber gloves before I went in and when I came back out. I said, ‘Why do I have to do this?’ They said, ‘Well, you know why,’ and I didn’t know why but I guessed.”

He was transferred to a hospital in Iowa City. He hated being alone at night, and Mary stayed with him until he died on March 14, 1988.

By that time, the youngest Goedken had succumbed.

To all appearances, Clayton was a healthy baby. But about three months after he was born, he developed an ear infection. It was more than that, of course, and he landed in Texas Children’s Hospital in Houston.

“Clayton was just so beautiful lying there and he had tubes everywhere,” Janet says. “There was not a system working on its own.”

He died on Sept. 19.

Dennis, gentle and quiet, was devastated--by the loss of his son, by the deaths of his brothers, by a recent separation from Karen. He returned to Monticello, and a rented apartment.

“He talked about things he wanted to do,” Clare says. “He had done a lot of traveling, but there were places he wanted to see and was not going to be able to see them.

“He knew he was coming to the end, and he didn’t want to be here without his son,” she says.

The end came on Oct. 21, 1989, two years after Clayton’s death. “He just died, all there is to it,” Judy says. “He’d seen Carl and Ernie die, and his son, and he’d been through enough.”

Year after year, the Goedkens died.

* As Loras’ wife, Jan, deteriorated, she spent days in front of the television with a credit card in hand, ordering stuffed animals and dolls from television shopping channels.

“Just before she died she ordered a giant panda bear,” says her daughter, Kelly Pike, of West Point, N.Y. “When the UPS guy brought it, she was just so excited. That was her entertainment.”

Dementia set in. She no longer recognized Loras, and when she came home from the hospital before her death on April 18, 1990, she did not know it was her house.

“J.J. was probably the father figure for all of us,” says Lovett. Their father, Vince, “found it difficult to deal with the boys’ afflictions and he’d get depressed. J.J. sort of organized all of us.”

But for a long time, J.J. kept his infection secret, even from the three youngest of his five children. Eventually, he revealed all, and before he died on Aug. 1, 1991, he found comfort in the people of Monticello, who organized a benefit for him.

“It was so nice they did this before I die. I didn’t know I had so many friends,” he told his wife, Linda.

Karen--mother of Clayton, wife of Dennis--died that year as well. But she died alone; she had not wanted visitors at her Austin hospital, and she asked the staff not to reveal where she was.

How did this one family bear so much grief?

Simply, by concentrating on the ones who still lived.

“As each one of my brothers passed away, you knew you kind of had to be strong because there was somebody else sick, there was somebody else dying,” Steve says. “You really didn’t have time to think about what had just happened because when one died there was always another sick and dying at the same time.”

Loras brought hope to the Goedkens. Angry at first when he was diagnosed, he became a dynamo.

He spoke at schools. He testified before a U.S. Senate committee hearing on HIV. He traveled to Japan last year as a guest speaker at the International Conference on Hemophilia and HIV.

Loras Goedken was by all accounts a vibrant man, ambitious and energetic--even when hemophilia twisted his knees and elbows into swollen knobs. And he brought passion to his fight against AIDS.

“You gotta keep everything close together: Your physical well-being, your emotional well-being and your spiritual well-being,” he would say.

He was a wonder to his surviving siblings. “He had such a positive mental attitude. He was determined HIV and AIDS was not going to get him. . . . I honestly thought he was going to make it,” Janet says.

Six years had passed since the last AIDS death in the family. Maybe there would not be another.

But in March, Loras felt as if a bolt of lightning had struck his jaw. His back began to hurt so bad he couldn’t sleep.

Doctors said Loras had lymphoma, a cancer.

Loras hoped that chemotherapy would give him another three to five years. When a test in late July showed the cancer had spread, and other medicines would produce strong side effects, Loras decided he’d had enough.

“I’m ready to die,” Loras told Janet by phone. “But I’m not looking forward to the path.”

Steve drove to Houston to spend a week with his brother.

“I believe I’m going to see my wife, I’m going to see my brothers, and we’re going to have a big party,” said Loras, skeletal and bald. “I miss them. So from that standpoint, I’m looking forward to it.”

Janet arrived from Australia the night of Aug. 24.

“How’s Loras?” she asked.

“He died four hours ago,” Mary Kearny said. They sat in the airport for a while and held each other while she told Janet about that last hour.

“He was talking the whole time, but they couldn’t understand him,” Janet says. “I think maybe he was seeing all his brothers and they were talking to him, helping him through that last hour.”

Mary Goedken is alone now--her husband died of stroke earlier this year. Now, in her little white house, dozens of family photographs line the walls and the shelves. The Goedken brothers look out of their tinted graduation portraits, young, handsome, their eyes soft.

Half a mile away, there is a row of small pink headstones in the Sacred Heart cemetery in Monticello for the Goedken family.

“It really was a blessing to be born into this family,” Judy says. “I didn’t think so growing up. I wanted out. But over the years I’ve become thankful for the lessons they’ve taught me. I think I’m a better person for having known them.

“I didn’t have to look for heroes outside my family,” she says. “I had them right here.”