Don't quit - 1/2/05

By Michelle Martin
Staff writer

Don’t quit.

That’s the message Kevin Bailey looks at every time things start to seem too overwhelming.

“It’s on a prayer card that Kathy gave me when I was in the hospital,” said Bailey, who survived testicular cancer and has been in remission for a year. “I gave the original back to her when she was in the hospital, and she has it still. But I got another one, and I keep it in my Bible.”

Don’t quit.

No one would blame Bailey, 41, if there were days he felt like giving up. At one point in 2002, he was in treatment for his cancer and had been diagnosed with Addison’s disease, a deficiency of the hormones generated by the adrenal cortex; Kathy, his wife, suffered from non-Hodgkins lymphoma; and his daughter, Cecilia, was being treated for leukemia.

Things were looking up for the LaPorte family a year ago, when he and Kathy seemed to be cancer free and Cecilia, then 5, was nearing the end of her chemotherapy. The family’s two sons, Zachary and Robert, remained healthy.

But it came crashing down by the end of January 2004. Kathy’s cancer returned with a vengeance, when doctors found two huge tumors in her abdomen. Cecilia had to be signed out of her last chemo session to say goodbye before her mom, then 38 years old, died Jan. 26. And within weeks of Kathy’s death, Cecilia had full-blown leukemia again.

“You get tired of it,” Bailey said. “You want to quit, but you can’t. You’ve got to try.”

None of the Baileys has quit, least of all Kevin. Shortly after Kathy died, Kevin started RCIA classes at Queen of All Saints Parish in Michigan City, the parish where he and Kathy were married 23 years earlier and where he participated with his family since then. Baptized in another Christian church as a child, Kevin expects to come into full communion with the Catholic Church at the Easter vigil March 26.

“I’ve become more strong with going the way I’ve gone,” Kevin said. “I’ve had people tell me to see a psychologist or a shrink or something like that. But I’ve found a different way of life. What better

something like that. But I’ve found a different way of life. What better help is there than God?”

Now Kevin splits his time between home and Riley Hospital for Children in Indianapolis, where Cecilia, now 6, has been in isolation since a Sept. 7 bone marrow transplant. His mother-in-law, Karen Kalkitz, switches off with him, spending three or four days at a time at the hospital and then caring for Robert, 8, and Zachary, 12, when Kevin is in Indianapolis. Family friend Judith Cook—Auntie Judi to the kids—provides relief, staying at the hospital when Kevin or Grandma Karen can’t be there.

Complications mean that Cecilia has left the hospital for a nearby Ronald McDonald House only twice; both times, a fever spiked and she was rushed back in. As of mid-December, doctors didn’t know whether she would be able to leave the hospital for Christmas.

Staying with Cecilia means spending 24 hours a day with her, Cook said, waking several times a night to help the little girl get out of bed, untangle the tubes and wires attached to her and make it to the bathroom. Diarrhea is one of the problems caused by her host vs. graft disease, a complication from the marrow transplant.

The family uses the Ronald McDonald House as a base to grab a shower, or maybe cook for Cecilia.

“She hates the hospital food,” said Cook, who took a shift of several days in December when Kevin was not allowed in because he had a flu-like virus. “The other night I made her some steak and potatoes and she at it all up.”

Cecilia’s a tough little girl, Cook said, spending her days playing games, coloring and getting tutoring so she can keep up with classmates back home.

“She doesn’t mention her mother much, except to tell people she’s passed away,” Cook said. But the doctors’ recent decision to insert an intravenous line to deliver medication was just too much.

“Yesterday, she looked me dead straight in the eye and she just wailed, ‘I want my mommy!’” Cook said Dec. 5. “Every kid in this hospital is in a bad situation, but for her, it’s worse, because she doesn’t have a mom.”

What she has is a team, including her family, Cook and her husband Bryan, other family friends and neighbors all pulling together.

“I was telling one of the nurses this morning how blessed we are, because we do have a team,” Cook said. “She was looking at me like I was crazy.”

For Kevin, staying at home means laundry, driving the boys to school and activities and all the other duties a parent must attend to. When he’s not there, Cecilia calls him from the hospital every day. Kevin also tries to visit Cecilia’s friends, sometimes stopping at Brownie troop meetings to keep them up to date. Her friends have not been allowed to visit her because of the danger of infection.

Her brothers can and do visit, but not too often and not too long.

They have school and activities, Kevin said, and they really don’t like to go very much.

“They don’t like to see their sister like that,” he said. “They remember their mom.”

But Cecilia worries about them, Kevin said in a telephone interview from the hospital Dec. 11.

So far, Kevin’s health is holding up, as long as he takes his medication for Addison’s disease. But there is no money—the family’s medical bills are estimated in the millions of dollars, and Kevin, a union carpenter, has not been able to work much. Poppy—Kevin’s father-in-law—retired last spring, which was a blessing in terms of caring for all three children last summer, but meant fewer financial resources.

“The doctors said to live a stress-free life,” Kevin laughed. “Being mad doesn’t do any good. I’ve seen that throughout my life. … You get mad, but you can’t quit believing. If you don’t have faith, you might as well jump in the lake.”

A foundation has been set up to assist the Bailey family. Donations can be sent to: The Bailey Foundation, c/o LaPorte Savings Bank, 710 Indiana Ave., LaPorte, IN 46350. For more information, visit www.baileyfoundation.com.