Tuesday, September 27, 2005

Gratitude opens doors her rare disease can close

Monday, September 26, 2005

As she begins her studies at Stanford University this week, Amy Frohnmayer ponders the usual freshman worries: What should I major in? Will I get along with my roommate? How will I find all my classes?

One uncommon question also follows the South Eugene High School graduate: When will I have to put college on hold and head for my transplant?

Eighteen-year-old Amy has Fanconi anemia, a rare genetic disease that killed both her sisters. The illness brings a high risk for cancers and hampers the formation of blood cells, leading to anemia, fatigue, infection and bleeding. A bone marrow transplant doesn't change the cancer risk, but it can fix the blood problems, stretching life expectancy beyond the usual 20 years.

But there's a catch: This particular transplant works best when patients are fairly healthy, before they develop leukemia or severe infections. It also leads to the death of more than a quarter of patients, making it wise to delay as long as possible.

"I actually was going to have a transplant instead of going to school this fall," she said at her home in Eugene, as she prepared to leave for college. But "I'm so healthy now, and starting school, I just wanted to get on with my life.

"I'm getting used to the idea that it's up in the air, and someday I'm going to have to do something . . . But that's life. It's random and unexpected."

For Amy, life is a mix of wonderful possibilities leavened with the certainty of hard times ahead. In one sense, she said, she's no different from others: A traffic accident could cut short any life on any day. But Fanconi anemia amplifies that, offering keener awareness of life's joys while forcing early, often public, experience with sickness and death.

The Frohnmayer family has dealt with the disease since before Amy's birth. Her oldest sister, Kirsten, was diagnosed in 1983 at age 10. Her other sister, Katie, also had the illness. Her father, David, now president of the University of Oregon, dropped out of the governor's race in 1986 to help care for the girls. Their mother, Lynn, quit her state children's services job to do the same.

The family started a fund to spur research into the illness, which was poorly understood at the time, and launched a highly publicized search for compatible bone marrow donors. They registered thousands of donors, which helped other patients, but found no match for the two girls.

Neither of the Frohnmayers' sons, who don't have Fanconi anemia, was a bone marrow match. Before Amy's birth, the family hoped she could be a compatible donor. She was a perfect match for Katie. But tests just after Amy's birth showed she had Fanconi anemia. That meant she could not be a donor but would need one, too.

Katie Frohnmayer died in 1991 at age 12. Kirsten Frohnmayer died in 1997, two years after a transplant from a mismatched donor, and two years after getting her bachelor's degree from Stanford.

"Having my two sisters die has been very painful," Amy said. "But it's also given me an appreciation for what I have. It just reinforces that life is so fleeting, and we are lucky to be here and have the people we have in life."

Healthier than her sisters

Amy is healthier, at her age, than either of her sisters were. She has not yet had a major health problem. When she does, and needs a transplant, the family has identified a potential donor who is a 70 percent match. And the fund, at Lynn Frohnmayer's urging, sponsored research into a drug that has improved the success of such mismatched bone marrow donations to perhaps 70 percent, more than double the previous success rate.

Those odds spurred the Frohnmayers to New York to ask a doctor about a transplant this year. The doctor saw Amy's robust health and busy life, and advised the family to hold off. "He said, 'Do you really want to do this?' " her mother recalls. " 'Yes, her chances are 70 percent. But what I want you to hear is, it's only 70 percent.' "

So the family is waiting, looking for signs of troubling mutations in Amy's blood cells. She'll have blood drawn every six weeks at Stanford and have bone marrow tests in Portland every six months. In the meantime, she'll continue taking only a small dose of medicine to boost her blood counts.

"I have lots of energy. I feel good. I feel healthy," she said. "The bottom line is, I'm extremely lucky."

Grateful to be alive

Amy threads her gratitude through life in many ways. Tacked to her bedroom door in Eugene before she packed for school was, "Some Reasons why Life is Beautiful." The two-page list included chocolate milkshakes, towels hot from the dryer and getting mail. The first item: "Falling in love." The last: "Getting out of bed every morning and being grateful for another beautiful day."

In high school, Amy packed her schedule with activity. She took courses to earn her International Baccalaureate diploma, took part in the Model United Nations and was an officer in student government. She played on the tennis team and helped found the girls cross country ski team.

The senior class voted her "Most Likely to Succeed."

"The whole school knows she has this disease and knows the implications of that," Lynn Frohnmayer said. "But they voted her most likely to succeed. I thought that was fascinating."

Amy volunteers with Courageous Kids, a group that helps children deal with grief and death. Members started mailing her after her sisters died. But Amy didn't go to meetings then. She wasn't sure about public grief, shied away from counseling or support groups and felt she had to be strong for her parents. Grief, she said, is taboo in American culture -- a topic she explored in a high school research project.

"Isolation is a huge issue throughout the grieving process. You feel alone," she said. "People are extremely afraid to talk about death."

Amy is working to change that. She makes a point of saying her sisters "died," avoiding euphemisms like "passed away" or "lost." She works with a Courageous Kids theater group, showing how grief can be healthy. Two summers ago, she was a Courageous Kids Camp counselor for four girls whose fathers had died.

She said she may want to work with grieving children after college, perhaps becoming a social worker like her mother. It's a path Lynn Frohnmayer can picture.

"Amy is one of the most sensitive and caring and genuinely, deeply kind and compassionate youngsters I have ever known," her mother said. "Maybe that compassion, in part, grows out of what she had to experience and endure, but there's more than that. She got this dreadful FA gene. But she got a gene for compassion, too."

A new experience

Social work will have lots of competition at school. Amy has a long list of competing interests: psychology, poetry, literature, Spanish and international relations. She wants to study abroad in a Spanish-speaking country. She is excited about the diverse student body at Stanford -- which includes her brother John, a junior there.

Picking Stanford, she adds, is no criticism of her father's college: "I didn't consider Oregon, but not because I don't think it's a great school. I do. But for me, part of the college experience is about getting out and being away."

But even as she leaves, Amy expects to find her way back to Oregon. She's already considering what she'll miss: grabbing a plate of pad Thai at Eugene's Saturday Market, hanging out with friends on 13th Street, hiking Mount Pisgah, getting frozen yogurt with her mom at a shop near their home.

Her parents, too, will have plenty to miss. For the first time since Kirsten's birth in 1973, there will be no kids living at home.

"I'm not looking forward to this at all," Lynn Frohnmayer said. "The bottom line is, she is my dear friend. She is a treasured companion. I love spending time with Amy. I'm going to have a bit of a tough adjustment."

Andy Dworkin: 503-221-8239; andydworkin@news.oregonian.com

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