It’s All Worth It : Treatment Is Hard, but Holan Knows He’ll Get His Life Back

ANAHEIM — For Milos Holan, the hope is stronger than the fear.

“I have to do it,” he said with a smile as he and his wife, Irena, snuggled and joked and greeted friends and well-wishers at the Mighty Ducks’ game Wednesday. “I’m not excited. It’s real hard. I know what I’m going to go through.”

Holan will enter the hospital Monday to begin a six-day regimen of radiation and chemotherapy to rid his body of disease in preparation for his Feb. 20 bone marrow transplant.

Without it, doctors say the Duck defenseman eventually will get sick and almost certainly die. With it, Holan can overcome the slow-progressing form of leukemia that blood tests revealed in September.

The life’s blood that can cure Holan is the gift of an anonymous donor he hopes one day to meet and thank. For now, he and Irena are concerned about the hardship and danger of the yearlong struggle ahead.

“I know everything that will happen, but I don’t know how my body will react,” said Holan, 24. “You don’t have an immune system. And then it’s like somebody else is inside your body.”

Not being able to know precisely what lies ahead is one thing all transplant patients face, and it’s one of the reasons Holan was so comforted when he met people who have had successful transplants.

“That’s the thing, the fear of the unknown,” said Laurel Simmons, a Boston woman diagnosed with the same type of leukemia Holan has in 1987, when she was 25. “Before you do it, it’s as if there’s this black box, this mysteriousness about it,” she said. “But just seeing someone who has come out of it, walking down the street, getting on a bus, eating in a restaurant, that helps eliminate the fear of the unknown.”

A routine blood test before the removal of Simmons’ wisdom teeth led to the discovery of her illness, which like that of Holan, was in an early stage almost without symptoms. Soon after the diagnosis, Simmons’ brother, Stuart, gave her the marrow that saved her life.

Now 33, Simmons works as the facilities coordinator for the artificial intelligence lab at the Massachusetts Institute of Technology, and spends countless hours administering an Internet mailing list for marrow-transplant patients.

“I try to tell them that it’s really hard--and really doable,” she said. “That’s a verb I notice people adopting. It might not seem like a good word, but I don’t know a better one. I think a lot of people are afraid, ‘How can this possibly be? How can I survive?’ But it’s eminently doable. It is hard, but it’s doable.”

Cindy Ladin of Agoura Hills received marrow from an unrelated donor to treat her leukemia in 1992 at the City of Hope National Medical Center in Duarte, where Holan is being treated.

“It was not as bad as I thought it was going to be,” said Ladin, 38, who said she was so fearful of the pain that she thought long and hard about whether to undergo the transplant, even though she believed she would die without it.

“The fact that I had children was my motivating factor,” she said. “Whatever it put me through would be worth it if it was for my kids. I figured my husband would be OK, but my kids needed me. I was that afraid, but I knew I had to survive and I don’t think I could have without it.”

Ladin’s daughters are 6 and 10, and when she speaks to people facing marrow transplants, she says she tells them one thing: “That it was worth it.”

On Thursday, Holan underwent a minor surgical procedure to insert a catheter into his chest through which chemotherapy drugs and other intravenous medication will be administered. Blood samples can be taken through it too, eliminating the need to stick him with a needle every time his blood needs to be tested.

“Like all patients, he’s coming in with a certain bravery to confront what he has to confront, not just for the sake of his own life, but for his wife and child,” said Dr. Stephen Forman, director of City of Hope’s marrow transplantation program who is in charge of Holan’s treatment.

The Holans’ 5-year-old daughter, Veronica, has gone to stay with her grandparents in the Czech Republic while Irena helps Milos through his ordeal.

Monday, Holan will check into the City of Hope for four days of radiation and two days of chemotherapy that will eliminate the disease but make him terribly ill.

“The chemo and radiation, that’s really the bad part,” Simmons said. “There’s very bad mouth pain, because the chemo and radiation kill fast-growing cells--which are mainly tumor cells, bone marrow cells, hair cells and gastrointestinal cells. That’s why you throw up and lose your hair, and get bad mouth sores.”

On Holan’s Day Zero--Feb. 20 if all goes according to plan--the donated marrow will be extracted from the donor’s pelvis in another city, flown to Southern California, and infused into his body, much like a blood transfusion.

“Patients never forget that date, the day their marrow went in,” Forman said. “It has a certain drama, even though it doesn’t look dramatic.”

For two to three weeks after the transplant, Holan will be unable to fight infections and will be in protective isolation in a room with a special air-filtering system. Doctors will closely watch for the possibility of life-threatening complications--and for signs that the new marrow has begun to engraft, beginning to build a healthy immune system. Once it has, Holan will be removed from isolation but remain in the hospital--typically for a total of about six weeks.

Patients who suffer severe complications, such as infections or a type of rejection known as graft-versus-host disease, remain longer. Doctors administer a dizzying array of medications, many of them designed to treat side effects triggered by the treatment.

“There’s nothing predictable,” said Simmons, who went home after 40 days in the hospital. “You never know what’s going to happen the next day. I had graft-versus-host disease, and the drug I took, prednisone, had enormous psychological side effects. It gave me hallucinations.

“Your hair does start growing back and you have a little peach fuzz by the time you get out of the hospital. That part really bothers some people. I always thought it was kind of cool. . . . With a transplant, it’s so drastic you give up all pretense. You’re in the hospital and no one cares how you look.”

Six months after her transplant, Simmons was back at work.

“The doctors tell you to stay out longer, but you get so colossally bored, so antsy to get out of the house,” she said. “I lived close enough that I could crawl from my apartment from Cambridge.

“I was supposed to wear a surgical mask or dust mask. I could go outside, but I was supposed to take my mask. You’re more limited by your walking ability than anything. There’s a lot of fatigue. It took me a year before I felt like I was walking as fast as before.”

There are precautions to take, but gradually life returns to something close to normal.

“They ask you to try to limit being around children at first, partly because you don’t have your childhood immunities,” Simmons said.

“Chicken pox is one of the main things, and adults who get it often get shingles, which apparently is really painful.”

Holan knows to expect terrible discomfort, but he does not know how he will respond.

“This is not hockey. I know how to be tough on the ice. I don’t know about the hospital,” he said. “But I know I will feel better and better.”

Simmons and Ladin say they lead normal lives, without medication other than the replacement hormones Simmons takes because the radiation brought on early menopause.

Like Holan, they entered the hospital knowing there was a chance they wouldn’t survive the treatment. But they knew that if it succeeded, they could be reborn.

“When you’re faced with such a crisis you just do what you have to do,” Simmons said.