Andy's Story
Nurse details son's struggle with cancer and her own battle with his HMO

By Michelle Paolucci
February 5, 2002

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."

In October, Assistant Managing Editor Michelle Paolucci met with Marilyn Azevedo at her 130-year-old farmhouse in Two Rock Valley, Calif., and asked her about the events of Sept. 11.

What was your reaction to Sept. 11?
One of the things that I did do was to immediately sign up for the Red Cross, so that I could go wherever. I think one of the hardest things was for the medical personnel not to have anyone to help.

There was nothing to do. The victims were atomized. And those people were so prepared, so quick, so ready.

I think it changed everybody's perception of goodness and service and patriotism. [There are] young people who have grown up having no perception of WWII, Korea or Vietnam, who never had to experience anything like that. And to have it thrust upon them in such a dramatic way.

I feel such pride that I am in a service profession-the police, the firemen, the nurses, the doctors-what they did on TV and in the newspapers is what we've done as medical personnel for years. You know you are there because you have a heart and you want to care for people. That was great to see.

What do you think Andy's reaction would have been? What would he have been doing?
Andy would have probably been in the Air Force because that was one of the things he wanted to do and he wanted to be in there to do search and rescue. So, unless he stayed here and was a farmer, he would have been there.

What would you tell parents who lost their children that day?
I had to give a speech at a book fair the Saturday after it happened, and I didn't want to go. I didn't want to talk about my book. I was on a panel on death and grief. What I was feeling when I went there was I know what 10,000 parents are feeling ... and my heart's broken. It really reawoke in me my grief so profoundly that I could barely function. I mean just the overwhelming feeling knowing what all these people were going through just was awful.

I just wanted to tell all these people that were there that I am brokenhearted and all I want to do is cry and give you all a hug. There is nothing else.

And these women who were doing their book were saying everybody needs to get in touch with their own mortality, and I thought what a horrible thing to be here talking about. I didn't want to be there with them. I felt like I was in the wrong place. I wanted to be able to tell people that this is real. This isn't building little temples to your immortality that you may use on your journey, but the feelings are much deeper than that.

What saddened you about Sept. 11, in addition to the tragedy itself?
I brought a card that Andy got just before he died-from a nursing student-to a book fair I did. The nurse had given Andy the card when she was just about ready to graduate. Her name was Gabull Abdullah, and she talked about when-just before Andy was dying-he had called her and talked to her and she didn't tell him what was going on in her life, but he was talking about his struggle and how hard it was to do what you know is right.

She said that her uncles and brothers were telling her that she had to leave nursing school and go back to Iran. She said she got the courage to tell them that she wasn't going to quit school and that she was going to be a nurse and that she was going to stay here.

The card said, "I didn't tell you that, but I just want you to know that all I've ever wanted is to have a family and community that supported me like you were." She said it in this letter and I just read it that day because I wanted people to know that women from Iran felt the same way that we did. You were just starting to hear how people were being treated for their ethnicity.