Ruth Hoffman is the mother of 8 children, but she calls her second oldest, Naomi, her soul mate. Their close relationship was forged during the months Naomi spent in the hospital, and then at home, while being treated for acute myelogenous leukemia (AML), a type of cancer that starts in blood cells. Naomi was 7 years old. Hoffman says they played a lot of games, read a lot of books and talked.
“We decided together we’d always be honest with each other. We promised that when one of us was down the other one wouldn’t be. We had this flow that worked. We talked through the probability of not being able to have a baby and about the possibility of dying. She said she knew if she died, she’d be out of pain so she’d be at peace. For her, death was connected with not being in pain.”
In 1987, 7-year-old Naomi was losing weight at an alarming rate. She was lethargic and pale. She had difficulty breathing, and such severe bone pain that other children had to help her get on and off the school bus. It took months of doctors’ visits and then weeks of testing before she was finally diagnosed with AML and started on a treatment that would eventually include chemotherapy, radiation, and a bone marrow transplant. Hoffman struggled to support Naomi through her treatment, while also raising her 9-year-old and 1-year-old children. At the time Naomi was diagnosed, Hoffman was also pregnant with twins.
Survival rates for children with AML have improved in recent decades as doctors have learned more about treating the disease. But in 1987, doctors were concerned that Naomi wouldn’t survive the transplant. “Almost all the kids on the floor died,” said Hoffman. “There was a high probability she wouldn’t make it.” Doctors gave Naomi additional rounds of chemotherapy while they postponed the transplant until after the twins were born. Hoffman says this was done so that she’d be able to be there throughout the entire ordeal.
Naomi’s donor was her 9-year-old brother, who donated the bone marrow under general anesthesia. (Today, stem cells for transplant are usually collected through a less invasive procedure.) Hoffman says her entire family suffered. They were separated as a family with 2 of her children staying with friends and family in one city and her newborn twins cared for by their grandmother in another city. When they were reunited again after months of being apart, her 1-year-old son didn’t remember her. It was, she says, traumatic.
Hoffman says medicine to treat nausea and vomiting, common side effects of cancer treatment, was not as effective in those days, and Naomi was sick a lot. But Hoffman says she was “a trooper” and played on her bed in the hospital when she could. The worst time, says Hoffman, came when Naomi improved enough to leave the isolation room. “She’d developed a safety net around her in that room,” said Hoffman. “She was literally terrified to step on the floor and go out of the room; it took her awhile. She cried and cried. We both cried and cried.”
A couple of years after Naomi’s bone marrow transplant, one of her doctors asked Hoffman to join a committee as a parent advocate. She would help talk to lawmakers about the need for more money to be spent on cancer research. She was asked to sit on another committee, and then another, and soon she quit her job as a teacher to do advocacy work full time.
Today she is the executive director of the American Childhood Cancer Organization, which provides parents with information and support about childhood cancer treatment and research. She is also a member of several national and international committees, some of which work with or receive funding from the American Cancer Society. Her work takes her from hospitals to meet with children and their families, to Capitol Hill to meet with Congress members and ask for more funding for cancer research and prevention programs.
“You meet the children and see the needs and you can’t turn your back on that,” said Hoffman. You can’t walk away from a child with cancer. You learn that childhood cancer impacts your life forever.”
INSPIRATION: Although Leah suffered from Congenital Neutropenia and not cancer, here is some inspiration for families with children battling serious illnesses.