""Bad"" Sister Saves ""Good"" Sister From Leukemia: A Survivor"s Story

(Editor"s note: This article is part of the special cancerpage.com series which focuses on cancer survivors.)

By Sally James, cancerpage.com
Seattle, Washington

(Sept. 5, 2000) When Jennifer Caesar tells the story about her 1977 bone marrow transplant, the first three words are “My sister Becky.” Becky was the donor. That tells you something about Jennifer, who doesn’t put herself first.

The two sat at a recent reunion of transplant patients in Seattle at the Fred Hutchinson Cancer Research Center and teased and laughed and enjoyed each other.

Between them runs a bond of blood deeper than most of us can imagine. Blood is in their past, where Jennifer’s diagnosis at 20 of leukemia was almost a death sentence. Blood is in the future, because Jennifer is once again facing a transplant, this time for her liver. The story, once again, may begin with “My sister Becky.”

Sister Becky is Rebecca Howe, a self-described housewife from Salt Lake City. She’s tan and slim and glamorous at 45. When Jennifer tells the story of her long-ago transplant, Becky is quiet. But she is ready to speak loudly with her actions. Becky is prepared to endure a complex surgery in order to donate half of her liver to keep Jennifer alive again. Jennifer has Hepatitis C, a viral infection that sometimes leads to cirrhosis of the liver.

Jennifer’s infection with Hepatitis C is an unfortunate legacy of her years of treatment for leukemia. Researchers have only recently begun to unravel the C virus, unlike some of its sister viruses. No test for C was available in the 1980s, and so blood products such as platelets were not screened for it. Leukemia patients often received whole blood transfusions or just blood byproducts, such as platelets as part of their treatment. In one of Jennifer’s many treatments 23 years ago, she caught this virus.

Infection does not automatically progress to a serious illness, but at its worst the virus can cause cirrhosis of the liver and even liver cancer.  There is some research evidence that Hepatitis C infection may progress more quickly in marrow patients. Her disease has already caused permanent scarring of her liver. She needs a liver transplant.

Bad Girl Turns Out To Be A "Saint"

Becky was the bad girl during their California childhood. She was the one who lived too fast and broke too many rules. Jennifer was the good one. She was the eldest. Jennifer was working as a waitress and attending Sacramento State University when she first had bone pain. She didn’t have a regular doctor. It took months for her to finally get diagnosed with acute myelo-monocytic leukemia, AMML for short.

“He came out from the back of the desk and held my hand,” Jennifer said. She wondered why her doctor was walking over. He thought he was delivering a death sentence.

At the survivors reunion she showed pictures. First she showed the photograph of her hair before she endured the radiation and chemotherapy that would make it fall out. Her hair was a magnificent flaxen sheet that hung to her waist. The next photo shows her bald, as she was during her treatment at the Fred Hutchinson Cancer Research Center. She still has the hair, in a bag, as a memento.

"Bad-girl" Becky, who was living a fast life in San Diego, turned out to have the best tissue match to be Jennifer’s donor.

If we fast-forward 23 years, the two sisters are fashionably dressed and still glamorous in a ballroom full of other survivors and families. They are laughing as they tell the story. They laugh about how the family disapproved of Becky, who now says she is perfectly good. They show photographs of their children. Jennifer adopted two boys who are Native American, and she shares stories of her life at the winery that she and her husband, Joe, have in Fiddletown, Calif.

She has lived through the disappointment of being infertile because of cancer treatment. She has lived through developing insulin-dependent diabetes. She was so inspired by her transplant nurses that she studied and became a nurse and worked for many years, until the fatigue from Hepatitis C made that impossible. Financial problems, once distant, are growing closer.

When she became unable to work, she was allowed to continue her employer’s health coverage by paying the monthly premium herself. That expires this fall. She is unsure of how she will find a new health insurer considering her present illness. At a table of other transplant survivors, urgent advice comes from others. “Get started now. Go to the state welfare office and ask about state health coverage,” says one woman.

“I don’t know,” Jennifer said. She isn’t in dire medical circumstances yet, she explained. Because her husband’s work at the winery keeps him at home, he helps with preparing meals and chasing the toddler and diapering the baby. Her energy is not high enough on most days to put the boys in the car and go grocery shopping.

Hope for Jennifer lies with a complicated, dangerous and expensive new transplant. She is not eager to begin the process. As a professional nurse, she knows that she isn’t yet in dire need. As a mother, she knows she wants to wait until the last minute so she can enjoy the boys as much as possible. As a sister, she hopes some new medical treatment might come up that will keep her sister, Becky, from having to endure the surgery.

As usual, Jennifer does not put herself first. “I can afford to wait a year or two,” she said. 

SOURCES:

• Interviews by reporter Sally James at the August, 2000 reunion of Fred Hutchinson Cancer Research Center transplant patients, Seattle, Washington.
• Blood and Marrow Transplant Newsletter article entitled, "Hepatitis C Virus and Marrow Transplant Survivors".

OTHER RESOURCES:

• For more information on issues relating to survivors and insurance see the cancerpage.com special series entitled: "Going for Broke without Going Broke"