June 1987. A panel of doctors sits on a stage in the Maryvale High School auditorium and looks down at an audience of several hundred west-side residents. The doctors say there is no reason to worry about the strange outbreak of leukemia that has killed several children in the west Phoenix working-class community. Certainly drinking-water wells polluted with chemicals suspected of causing cancer could not have caused the children's deaths, the doctors say. The doctors opine that the Maryvale "cancer cluster" happened by chance.
Carmen Phillips, a 44-year-old grandmother, stiffens when a Maryvale physician, a woman with frosted hair, notes that she herself lives in west Phoenix, and her kids are just fine. Maryvale is obviously a perfectly safe place to live, the doctor says. What does she know? Phillips thinks to herself. What right does she have to talk down to us?
Disgusted with the doctors, Phillips returns to her west-side home to care for her 2-year-old grandson, Joshua, who has leukemia.
Her days are consumed with efforts to keep Josh alive.
In the years that follow, state and federal studies try to count how many west-side children got leukemia. Carmen and her daughter, April, Josh's mother, pay little attention. They already know a lot of kids in Maryvale have leukemia. They see them at the hospital.
Because April has no insurance, Carmen and her husband, Carl, become their grandson's guardians so that Josh's medical care will be covered under Carl's policy.
Carmen and April are vigilant, making sure that doctors and nurses don't kill Josh with sloppy errors. And they bolster Josh's spirits. Every time he has a spinal tap, the Phillips family scrounges up funds to buy him a Nintendo game.
Josh is devoted to Carmen. He calls her "Nan," short for Nana.
Josh is half Latino, and sometimes medical personnel make unkind comments about Latinos. "Yo no comprendo," Carmen overhears Josh's doctor joke to hospital personnel after visiting a Spanish-speaking patient across the hall from Josh. Carmen forbids the doctor to enter Josh's room. She files a complaint with the hospital.
After Josh completes more than five years of chemotherapy, state and federal doctors confirm that for 16 years, children in Maryvale contracted and died from leukemia twice as often as children in other parts of the Valley. But the number crunchers fall short of identifying a cause for the illnesses. They say their science is not advanced enough to determine whether the outbreak was caused by drinking water pumped out of wells that the City of Phoenix closed in the early '80s. Those wells were laced with a suspected carcinogen, TCE, or trichloroethylene, an industrial degreaser that had long been used by electronics factories in the area.
In 1992, the Phillips family signs up Josh for a class-action lawsuit in Maricopa County Superior Court. The famous Lofgren v. Motorola case alleges, among other things, that certain industries, including Motorola, polluted city drinking water and made Josh and other children sick. The lawsuit focuses primarily on victims of blood cancers, such as leukemia, and blood disorders that can develop into blood cancers.
Although Josh seems to be recovering from his leukemia, the family knows cancer can return and hopes the lawsuit will net sufficient money to pay for the boy's current and future medical bills.
But Carmen's hope dies in 1998, after six years of court hearings and depositions and affidavits, when Maricopa County Superior Court Judge Steven Sheldon sides with the industries. The judge essentially throws out the claims of Josh and other children when he rules there is no proof TCE in drinking water causes leukemia or any other blood disorder or disease.
The Phillips family is thankful that before Sheldon made his ruling, Josh's lawyers had settled with several small companies and had gotten about $20,000 for the boy. But the sum won't even cover the boy's nightly medication, which costs about $35,000 a year.
By now, it's 1998 and Carmen isn't feeling so terrific herself. She fatigues easily, and for well more than a year, a quarter-sized sore on one calf has not healed. Strange knots are growing on her legs, making it painful to walk even to her mailbox. Her PacifiCare doctor can't make a diagnosis, tells her to wear support hose. And, ironically, Carmen is referred to the office of the very doctor whose "my kids are fine" speech 13 years before had so offended Carmen.
Carmen tells PacifiCare she'll see anyone but the physician with frosted hair.
It takes a full year and numerous visits to various doctors before PacifiCare finally refers Carmen to Mayo Clinic, where she is promptly diagnosed with a blood disorder that can turn deadly if not properly treated.
Carmen knows experts in the class-action lawsuit had testified that such diseases can be linked to TCE exposure, but Judge Sheldon had thrown out the testimony.
January 2000. Carmen Phillips sits in her west Phoenix living room, which is decorated with ceramic flowers and ceramic elephants and antique dolls. There is an old Victrola in one corner of the room and a working jukebox in the den.
She's toiled hard to create a happy place for Josh and her other grandchildren.
But Carmen is hardly carefree. She says PacifiCare has still not paid off all of the $4,000 bill for earlier approved visits to Mayo. Worse yet, PacifiCare has refused to refer Carmen back to Mayo for critical monitoring of the progress of her illness.
"We feel her disease can be managed within network," says PacifiCare spokesman Geoff Jaroch, explaining why the HMO won't send Carmen back to Mayo.
"I am trapped in the middle of this twisted, corrupt HMO bureaucracy having the life squeezed out of me slowly," Carmen writes to PacifiCare.
"In an attempt to save myself, I am reaching out for support and guidance on where to turn. I am requesting that PacifiCare authorize me to visit the Mayo Clinic at least four times per year. . . . Thank you for taking the time to read this letter, I am in great hope that you can help me fight for my life. I want to live as long as possible to enjoy my family. . . ."
PacifiCare responds by notifying Carmen that her complaint will be automatically appealed.
"I am so tired of all this paperwork," says Carmen. "Now that I am sick, it just takes too much energy."
Josh walks into the living room. He is a happy, seemingly healthy 14-year-old. He is currently smitten with a girl named Jessica, and spends hours talking to her on the phone. He excels in science at school, and loves to play basketball.
But he is worried.
If Nan gets sicker, he asks, will she recover?
Will she be as lucky as he was?
Josh bolts to answer a phone call from Jessica.
Carmen says, "He's taking this hard."
"He is my life."
For years, she's tried to protect Josh from leukemia and insurance companies and inept doctors and disappointing court rulings, but now she can't protect him from his greatest fear, losing her.
Contact Terry Greene Sterling at 602-229-8437, or online at firstname.lastname@example.org
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