Amelia Worth is brave. She also is determined to live her life to the fullest, even if she has to fight leukemia for every minute.

The 22-year-old college senior hasn't let her illness slow her down throughout her studies at University of Oregon, taking online classes and a full class load every semester. Now Worth is again bearing a terrible burden, but she's squaring her shoulders and moving on.

Worth, a brown-eyed, blond young woman who always is quick to smile, graduated from Marshfield High School in 2002. She was diagnosed with acute myeloid leukemia in 2003. She has fought it off through chemotherapy and radiation treatments, and had a transplant of her own stem cells into her bone marrow. The transplant seemed to be working, as Worth started to recover and went into remission in February 2004. But by last summer, Worth's condition had deteriorated and she was diagnosed with myelodyplastic syndrome, a condition that causes her bone marrow to stop producing blood cells effectively.

Since then, she has had frequent blood transfusions to provide fresh blood to her body's systems, leaving bruises that look like someone has been driving nails up the entire length of her forearms. Now she is faced with finding a donor for a second stem cell transplant.

“The best donor would be a sibling, but I'm an only child,” Worth said. “So now we're trying to match my genetic markers with one of the seven potential donors my doctors have found.”

MDS is considered a pre-cursor to leukemia, which is why many of the symptoms are the same, but if Worth has a transplant and her body begins to produce blood cells more effectively, she could remain in remission. If the transplant doesn't work, or if Worth comes down with host-versus-graft disease, she could die.

“Her MDS is slow growing right now, but it could develop into leukemia at any time,” said Worth's mother, Patricia Worth. “She bruises easily. If Amelia fell down and got hurt, she could have internal injuries and bleed to death.”

The situation is dire for most AML patients who develop MDS, and Amelia's doctors say her chance of survival is now about 19.8 percent.

“I've made four friends through having leukemia and all of them have died. So my chances are pretty good!” Worth said wryly.

The cost of living

The goal now is to get Worth the stem cell transplant before she develops leukemia again.

Worth and her mother have relied on the Oregon Health Plan since Amelia was first diagnosed, but after the first stem cell transplant failed, the state insurance program refused to pay for a second. The family couldn't manage the cost of private insurance with Worth's pre-existing health problems, but that changed when the Worth family received an unexpected gift.

Kathy Alden, 59, of Springfield, was a friend to Worth while she went through her struggles with leukemia. She gave Worth a financial gift before she died in October of last year.

“Kathy was diagnosed within a couple weeks of me,” Worth said. “Our health was on a similar track until she had a second stem cell transplant from a donor in England.”

Thanks to the Alden family's generosity, the Worth family was able to afford Blue Cross-Blue Shield high risk medical insurance, which covers 80 percent of medical costs - or most of them anyway.

Matching potential donors with Worth is expensive, a cost not covered by the Worths' insurance, but Blue Cross will cover the second stem cell transplant.

“We're paying $1,500 for each test for a possible donor,” Patricia said.

The biggest cost is the transplant, which alone has a price tag more than $500,000 at Oregon Health and Science University hospital in Portland. While Blue Cross will pay a great portion of the transplant cost, the Worths will be facing bills for around 20 percent of all medical costs, or for tests, procedures and consultations that aren't covered under the insurance policy.

“One of our biggest expenditures will be staying in Portland for four to six months while Amelia is going through treatment,” Patricia said.

Worth will be hospitalized for some of the time, but will have family and friends to care for her once the treatment starts. She is especially delighted that her boyfriend, Andy Case, who lives in Portland, is able and willing to help out.

Pulling together

When Worth was hospitalized for her first transplant, friends, family and community members both in Coos Bay and in Eugene provided help, support and fund raising for the family. Local efforts to help the Worth family face the next transplant have already started. (See sidebar)

“I'm going to have a lot of people pulling for me. I'm amazed by the support I've received,” Worth said.

When she goes to Portland in late June, she will be hospitalized to go through chemotherapy and radiation treatments again. The doctors at OHSU will totally wipe out her immune system through the chemotherapy, and then when she can't fight off an infection or reject a transplant of stem cells, Worth will have surgery.

Although she hasn't been through this process before, as the first transplant had very few risks, Worth says she knows what to expect - which can be both good and bad.

“I'm going to have six days of chemo, and then a day off, for about a month,” she said. “I expect it to be the same as last time. Except it will be harsher chemo, with more reactions and side-effects.”

Worth won't be able to touch or prepare food, clean, or go out into public after she's started chemotherapy, as she could be exposed to bacteria and could possibly become seriously ill.

“The transplant itself is really anticlimactic. They just push through an IV this bag of yellow stuff,” Worth said. “But hopefully in the end I'll be done with it all.”

Patricia and Amelia have been through rough patches before, and try to focus on the positive.

Worth speaks about her condition in a very matter of fact way, showing no fear of what lies ahead. Her eyes twinkle and her hands move freely through the air when she speak - totally unconscious of the flashes of dark purple bruise showing along her arm.

“I'm doing acupuncture, I do yoga, I take a lot of vitamins,” Worth said. “My doctors say I'm in pretty good condition, other than my blood - which is pretty important.”

Until school is out Worth will continue to have blood transfusions a couple times a week, spending 12 to 18 hours at the hospital getting two units of blood and platelets. Patricia and Amelia both are eager for the transfusions, chemotherapy and radiation to be over for good, and try to keep that goal in mind.

“It's been a really long haul. We've been doing this gig for over two years now,” Patricia said. “I'm ready for it to be over with. I'm ready for Amelia to live a happy and healthy life.”

Regardless of the forthcoming struggle, Patricia believes that Amelia will make it.

“I feel like we have enough faith, that even when Amelia doesn't have faith, that she has enough family and friends around her to provide her with the faith to get through,” she said.

Refusing to be beaten by leukemia, Worth keeps a positive attitude and a ready smile.

“I've been really lucky. I've been able to get financial aid and stay in school so I can get the proper health care,” she said. “The doctors say my age is on my side.”