If cancer were the enemy and U.S. health care reform the war, Marilyn Azevedo, RN, would have the Purple Heart by now. She earned her medal during three years of valiant battle with her son Andy's cancer and the gatekeepers to his treatment-his HMO.

It all started in 1988 when Azevedo, a hospice nurse, and her husband, Simon, a dairy farmer from Petaluma, Calif., learned that their 16-year-old son's seemingly innocuous football injury to his finger was clear cell sarcoma. He would die three years later.

"We were the kind of people who thought we were impervious to it. We live in the country. We raise our own food and drink our own milk. I was a good guy, I was a hospice nurse," Azevedo said.

Azevedo admits that being a nurse helped her in dealing with her son's illness, but it also had its drawbacks. She felt caught between knowing too much and wanting to be hopeful for everybody else.

"The nurse part of me knew what was going on. And that was a disadvantage because my family had much more hope than I had," she said.

Azevedo also said that losing her son made her feel inadequate as a nurse, because at the very time she needed to save someone she couldn't do it.

The farm kid
Soon after the initial diagnosis, Andy's doctors found more cancer, a tumor wrapped around his heart. The Azevedos took the aggressive approach and decided to find a surgeon to remove it. After some chemotherapy treatments, the Azevedos thought they had beaten the cancer.

So, Azevedo, along with her son and a small group of parents of children with cancer, lobbied in Sacramento and Washington in 1989 for health insurance reform for patients with chronic illnesses.

"When we went to Washington to lobby, here he [Andy] was, this farm kid, going right up to congressmen and senators, shaking their hands, looking them in the eyes and just talking. He just wasn't intimidated. He was telling the truth about who he was and what he felt," Azevedo said.

On their return, they discovered Andy's cancer had been growing in his lungs and had spread to his brain. Soon thereafter, his HMO denied coverage of an experimental therapy-a bone marrow transplant coupled with mega-doses of chemotherapy-his family and doctors believed was his only hope. His community rallied around him and raised $128,000 in only two weeks to cover the cost. Unfortunately, Andy suffered a stroke as a result of the tumors in his brain, which prevented him from being a candidate for the treatment.

With his last hope dashed, Andy and his parents accepted that he would not recover. His four siblings moved back home and, surrounded by his family, Andy finally lost his battle while at home in June 1991. The Azevedos believe that if they hadn't had to fight with their insurance provider, Andy may have been saved. But they will never know.

Force to be reckoned with
In 1996, as a result of the efforts of the Azevedos and the Parents of Kids with Cancer Foundation, President Clinton signed a bill into law, making it illegal for any health insurance company to deny coverage to anyone with a pre-existing medical condition. Sen. Barbara Boxer, D-Calif., has said that it was because of the stories Andy and the Parents of Kids with Cancer Foundation brought to Congress that the bill was successful.
Azevedo's latest endeavor is the book she wrote as a memorial to her son (Defending Andy: One Mother's Fight to Save Her Son from Cancer and the Insurance Industry, 2001, Health Communications Inc.).

It took her seven years to write the book and a year to write the first page, she said.

"I wanted people to be able to know what it would be like if they were going through it. I was trying to put the words inside me, so that I could make it real for people," she said.

Embracing her newfound calling as an author and her work advocating for the Patients' Bill of Rights now being considered by Congress, Azevedo still proves to be a force to be reckoned with.

She is even working on a new book tentatively titled Know Your Enemy: HMO Horror Stories and How to Avoid Them.

But sometimes Azevedo feels as though she might appear to be the enemy to parents of kids with cancer because she lost the battle that countless parents who come to her for counsel are trying to win.

"I tell parents: I'm your worst fear. I am someone who has lost."

But, Azevedo always knows just what to say to parents.

"I just want you to know that if it ever happens to you someday, you will be able to smile again. Someday, you will smell the flowers. Someday, you will listen to music and things will get better," she said.

Azevedo said she just wants parents to know their life does go on even though they will feel "this horrible, horrible hole" that will never go away.

On the other hand, Andy felt that sometimes winning might not always be staying alive, Azevedo said. That is just one of the messages Azevedo wants readers to come away with when they read "Andy's book."

"He wanted people to know that you need to be your own advocate," she said.

When you read Azevedo's book, she succeeds not only in making Andy real, she pulls you in like a mother's love, with her vivid detail of emotion. Once you've left her book, you feel as if you've known Andy and have lost him.

Azevedo believes her son, who would have turned 30 on Jan. 29, was strengthened by his cancer and she lends that strength to readers through her book.

"He absolutely felt that he was lucky, even when he had cancer, even when he knew he was dying. He felt lucky to be who he was, to feel the way he did, to live here, to have a community that supported him."

Contact Michelle Paolucci at michellep@nurseweek.com