From BMT Newsletter September 1994 Issue #25 - BMT's for Acute Myelogenous Leukemia Reprinted by NYSERNet with permission from BMT Newsletter
Five years ago Michelle Bailey and her family were wondering how they were going to pay for her BMT when she got an unexpected call. Illinois Gov. Jim Thompson was on the line and he told her that the state would pick up the cost.
His call was the result of months of hard work by Michelle's family to obtain funding. After almost a year of fighting acute myelogenous leukemia (AML), Michelle had capped out her father's insurance policy and Illinois Public Aid initially refused to cover the procedure. "At the time not a lot was known about autologous BMTs for AML." says 22-year-old Michelle. "The state said it wouldn't pay because they considered them experimental and there wasn't a high enough chance of survival."
Michelle and her family waged an intense campaign to bring attention to her situation. They wrote the White House and alerted Chicago TV stations, two of which ran stories on Michelle. She received the call from Gov. Thompson soon after. "I was really excited but nervous, too." Michelle says. "It was neat because I never knew that he would find out about it. It made me feel kind of important."
Her parents found an additional funding source in the newspaper, where they read about the state's new catastrophic health insurance program (CHIPS) that was going into effect near the end of 1989. "I was one of the first ones to be accepted into the program," Michelle says. "There was a waiting list of several thousand people. We signed up in April and there was a six-month waiting period." Michelle's BMT was in August 1989. The Illinois Department of Public Aid paid for the transplant and CHIPS covered Michelle's follow-up hospital stay and treatment.
Like most high school students, Michelle never thought about problems such as fundraising and insurance before June 1988. That summer Michelle was a 16-year-old honors student when she noticed she was bruising easily and sleeping a lot. "Luckily my mom's a nurse." says Michelle. "so she noticed all the signs. She was suspicious." After a blood test, the family's doctor sent them to a pediatric oncologist at Loyola University Medical Center.
After a bone marrow biopsy. doctors found that she had AML. Michelle underwent in-patient chemotherapy for eight months. spending at least five days each month in the hospital. "It was very intense because most of the time I had side effects," Michelle says. "That year I hospital 286 days. and after month I ended up relapsing was in the the eighth anyway."
Her doctor told Michelle that her only chance for survival was a BMT. "They got me into remission and then harvested my own marrow," Michelle explains.
Right before she underwent the BMT, though, Michelle got to take a trip as part of the Children's Hopes and Dreams program for children under 18. In June 1989 she went deep-sea fishing in the Florida Keys with her parents, older brother and younger sister.
At the time Michelle was diagnosed. her brother Michael was stationed in the Navy overseas. The Baileys wrote a letter to Sen. Paul Simon asking Michael to be let out on hardship leave. "They reassigned him so he was able to be here," Michelle says. "He's still here."
Michelle's community and church rallied behind her throughout her struggle to raise money for the BMT. Her church took up a collection for her and students at Naperville Central High sold "Save Michelle" t-shirts and buttons inspired by the movie "Ferris Bueller's Day Off." With the money the students started a trust fund to which local businesses contributed For example, the owner of a hair salon donated all of the proceeds from one day of hair cuts.
WGN-TV also broadcast an address where money could be sent. and Michelle received thou.sands of letters from viewers around the country. "I felt like I had to get better because everyone was supporting me." Michelle says. "I eventually wrote everyone back or thanked them in some way. It took a lot of time but I thought it was important."
Michelle has remained in remission after the BMT and says she "feels great" with the exception of some upper respiratory problems. "After the transplant. these problems seem fixable." Michelle adds.
Michelle graduated in 1990 from Naperville Central (Gov. Thompson was; on hand to present her the diploma) and finished her undergraduate degree in social work at Loyola University last May. This fall she will begin a two-year masters program in medical social work at Loyola.
Last summer she worked as a social work intern counseling BMT patients. Michelle's advice to BMT patient: don't anticipate problems before they happen. "Just take everything one day at a time."
The electronic version of this document was created by NYSERNet, Inc. through a grant funded by the New York State Science and Technology Foundation as part of the Breast Cancer Information Clearinghouse.