Amelia Worth, a University anthropology student from Coos Bay, loved Harry Potter and had dreams of traveling to Africa.
Worth struggled with cancer, going in and out of remission. She had said she wanted to be known as a woman living with cancer because of its constant presence in her life, such as her bi-monthly blood transfusions.
Worth had acute myeloid leukemia, which affects a person’s white blood cells, and suffered from myelodysplastic syndrome, which debilitates the body’s ability to produce mature blood cells.
Two weeks before Thanksgiving 2006, Worth died after living with cancer for almost three years.
Worth was a University senior.
“If you don’t believe you’re going to survive and if you don’t have hopes and dreams for the future, then you’re killing yourself because you don’t actually, truly believe in it,” Worth said to the Emerald last April.
The Fight
A team of researchers at Massachusetts Institute of Technology recently announced they have created a new technique for encouraging adult stem cell growth and survival.
Stem cells found in bone marrow develop into blood cells. Worth needed a stem cell transplant because her bone marrow wasn’t producing healthy blood.
Last spring, Worth knew she would need the transplant over the summer. She was an only child, and had no matching relatives. Her greatest fear was that a match might not be found.
“I’m scared shitless,” Worth said.
The MIT research has focused specifically on encouraging transplanted stem cells to grow new bone in patients with bone cancer or severe bone injuries. The hope is that one day a patient’s own stem cells can be removed and then transplanted to grow new, healthy tissue. This would eliminate the need for an exact match, which is what Worth was hoping for.
Life seemed a little less scary when a match was found, a close match too, which her friend and roommate, Susan Barney, said was from overseas, either from England or Israel.
Worth was checked into OHSU in June, only to find out the leukemia was back, and the $500,000 operation would have to wait.
“She went into the hospital and had to have chemo and get back into remission before they could do the transplant,” Barney said. “She got an infection and went into a coma and passed away.”
Worth was in and out of the hospital from June until her death, although she continued to stay hopeful, said Barney, a University junior.
“I try to think more about the positive, like how much easier it’ll be, how much less transfusions,” Worth said last spring. “For a long time, I was like, ‘I’m going to die. I only have six months left to live, better make it by best.’”
The Story
Barney and Worth met in the fourth grade in a youth symphony. Barney said she and Worth talked about traveling to Africa after she was better.
Worth hadn’t been better since she was diagnosed in January 2004.
After feeling tired and losing weight, Worth was initially told she had mononucleosis, but it didn’t go away. She went back to the doctor after her boyfriend, a University alumnus, persuaded her to have blood work done.
She was told she had leukemia and needed to begin chemotherapy.
By February 2004 it was all gone; the cancer, her hair and some of her ability to concentrate, remember and speak, which she called “chemo brain.” Then in July she had a stem cell transplant to regrow her bone marrow, which was weakened by the chemo.
In August 2005, the doctors told Worth she had developed myelodysplastic syndrome, MDS, induced by the chemo. Worth’s body was no longer able to produce healthy blood cells, which meant she would have a constant need for blood transfusions.
“It’s really hard to see my child sick when she should be thriving and independent, cultivating a life of her own,” said Amelia’s mother, Patricia Worth, last spring.
“She wasn’t the type who wanted people to sit around in black, being sad,” Barney said. “There are just so many people’s lives she touched.”
The Diseases
Breakthroughs in stem cell research have been somewhat limited, but many researchers, such as those at MIT, are working with adult stem cells, which, for some, have fewer moral implications than embryonic stem cells.
Federal funding is not available for much embryonic stem cell research, but there are no restrictions on funding for the study of adult stem cells.
The cause of Worth’s particular type of cancer, acute myeloid leukemia, AML, is not known – beyond common cancer-causing agents such as tobacco smoke. There are 11,930 Americans diagnosed with this type of leukemia annually, according to the Leukemia and Lymphoma Society.
Acute means the disease develops quickly, starting in the bone marrow, and therefore must be caught early on and treated with chemotherapy.
More common in adults than children, AML affects a person’s bone marrow and blood cell production. Symptoms include weight loss, fever, being easily and often fatigued or easily bruised, and reoccurring infections and bleeding.
Myelodysplastic syndrome, MDS, prevents normal blood cell production, so only immature cells are produced, which can cause anemia, fatigue, increased risk of infection and uncontrollable bleeding, according to CancerConsults.com.
While MDS gradually attacks the body, it usually strikes those older than 65, and patients can live with the disease, although cases like Worth’s require frequent blood transfusions.
For more information on acute myeloid leukemia visit www.leukemia.org or to find out more about myelodysplastic syndrome go to www.mds-foundation.org.
Contact the people, culture and faith reporter at [email protected]