Father fights enemy in his veins

A Spring Hill man has a rare blood cancer that has drained his strength and his finances. He has new hope in an experimental treatment, but not enough money to go get it.

By JOY DAVIS-PLATT

© St. Petersburg Times, published February 23, 2000

SPRING HILL -- Four years ago, Frank Florio struggled to make ends meet as a flooring installer in Long Island, N.Y. The cost of a home was well out of reach for his family, which had recently expanded to four with the birth of daughter Kylie.

But two years ago, after moving to Florida, with its more affordable housing, the Florios built their dream house in Spring Hill.

Now, rather than working to pay the bills, 36-year-old Florio is struggling for his life.

A little more than a year ago, Florio received a diagnosis of chronic myelogenous leukemia, a cancer of the blood that usually affects adults. For 11 months, he has suffered constant pain and exhaustion and has been unable to work.

Potentially lifesaving treatment can be had for free in Oregon, but without an income, Florio cannot afford the trip. And by midsummer, unless something changes, Florio said, his family will lose the house it worked so hard to build.

In the last three months of 1998, Florio lost 54 pounds. For months before that, he had begun to go straight to bed after coming home from work, blaming his persistent exhaustion on poor diet, the weather or the flu.

When Florio finally saw a doctor a little more than a year ago, he was immediately admitted to H. Lee Moffitt Cancer Center in Tampa; doctors said he would not live through the week.

"God must have sent us here to be near Moffitt," said Florio, whose dark hair and moustache have grown back since his last round of chemotherapy. "I've beaten every odd so far. Technically, I shouldn't be here right now."

There are about 3,000 cases of the disease each year in the United States, according to Dr. Steven Goldstein, a transplant physician who treats Florio at Moffitt. Without the proper treatment, he said, the disease is uniformly fatal.

In June, Florio's older brother donated bone marrow for a transplant.

For a month after the surgery, Florio was forbidden to hold his children for fear of infections. His first hug after the quarantine, Kylie asked if he still loved her.

"I almost dropped to my knees and started bawling," said Florio, the shadows of dark circles under his eyes. "I think that was the worst part."

In the end, the transplant failed, and cancer cells again attacked Florio's blood.

Chemotherapy, the bone marrow transplant and drugs have taken their toll on Florio, but he tries to keep his spirits up. Doctors at Moffitt, he said, are responsible for what life he has enjoyed in the past year.

In December, doctors estimated that he had another year to live, Florio said. But he is skeptical of the estimate.

"Cancer is a weird disease," he said. "It eats you from the inside out. It will drain you in every aspect of your life if you let it."

Instead, Florio clings to the love of his family, particularly his wife, Lisa, whom he calls his soul mate.

"I love her more every day of my life," he said of the woman who was his high school sweetheart. "I can't even fathom my life without her."

For Mrs. Florio, the most difficult part is not letting herself cry when her children, Kylie and 10-year-old Frankie, are upset.

"Frankie just takes it all in," she said. "I'm not sure Kylie understands everything yet."

"My son has been tossed into maturity," said Florio. "But I don't want him to resent me one day for keeping him in the dark."

Kylie cries whenever her father goes in for blood work, remembering the monthlong absences that went with his marrow transplant.

"It's kind of hard on her because I can't make her promises and she doesn't always completely understand," said Florio.

Florio said he is still in his house thanks only to the generosity of his parents and in-laws. The family has no health insurance and gets minimal Social Security and Medicaid, he said. Prescriptions alone run $2,000 each month.

"Every day, I deal with what I have to deal with and thank God that it isn't my children or my wife," he said.

Florio's parents are selling the house they have owned in Long Island for 34 years to move closer to their ailing son.

"My parents are supposed to be starting their golden years," he said. His mother retired two months ago from her job as a pharmaceutical assistant at a Long Island grocery store chain.

"This is not in my control," said his mother, Terry, who still thinks her youngest child looks too thin. "Frank has always been strong. He's a miracle."

Lately, Florio has started to believe in miracles.

He sees hope in a new treatment called STI-571, which targets an enzyme found only in Florio's type of cancer. It is unlike chemotherapy, which kills both normal and abnormal cells in an attempt to eradicate the disease.

Though the drug has not been approved by the Food and Drug Administration, a study at Oregon Health Sciences University has shown great initial results, Goldstein said.

"The early studies are very exciting," he said. "I don't think the researchers are claiming they have a cure yet, but this is another weapon against CML that otherwise we wouldn't have."

Participation in the study is free, Florio said, but the trip to Oregon and a required weeklong hospital stay are not.

"The fact of the matter is that it costs money to get it," said Florio, who wears a plastic valve on his chest for pumping medicine directly into his bloodstream. "The sad truth is that anyone with medical needs can have money put between them and a longer life."

Within the week, the family plans to set up a trust account at NationsBank for those who wish to contribute to their cause.

For now, Florio can throw a football with Frankie occasionally or draw chalk hopscotch boards on the driveway with Kylie. But even on good days, he only has about two hours' worth of energy.

Frankie and Kylie have had to grow up fast, Florio said; their childhoods fly by each day.

"My son doesn't sound like a 10-year-old when he prays," he said. "He says things like, "I'm only 10, and I need my daddy more than you do.' He prays for his father to be made whole again."

As bad as things are, Florio said he knows things could be much worse.

"I could wake up not knowing where my children are," he said. "I am very grateful for what I have. I am happy for the quality time I have with my family."

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