Still, Henry would stalk the halls of Riley Hospital for Children in Indianapolis, comforting older children whose parents didn’t have the luxury of quitting their jobs in order to stay with their kids. Despite Henry’s dancing, playing the guitar and instructing his caretakers on which drugs to take when, his illness progressed to the point where doctors could do no more. Because there was no hospice care offered for children, he spent his last few months at home with his parents, who could not help but feel abandoned by a place they considered home for most of Henry’s life.
“The hospital gave us our stuff, pushed us out the door after four years of living there, and waved goodbye,” says Michelle. “You are so ostracized by the medical community after a child dies. There are no programs. Out of this desperation, we started Team Unite.”
The hospital contends that they make every effort to work with and comfort the families by pointing to their Hope in Healing pediatric-bereavement program. “The sorrow surrounding the loss of a child is deeply felt by Riley Hospital staff,” says Jayme D. Allen, M.D., the medical director of the program. “We recognize that we cannot lessen the pain of a child’s death, but when a cure is not possible, we are dedicated to supporting the family as they cope with such a profound grief.”
Team Unite doesn’t have a staff or an office. It is part of a small group of organizations screaming at the top of their lungs to bring attention to diseases that get drowned out by illnesses that seem to have more cachet.
The founders of Team Unite say it is a grassroots movement, but it seems more — and less — than the term connotes. Instead of holding huge fundraisers and recruiting celebrities to the cause, Team Unite tries to reach everyone in order to show that impact can be made without hefty donors. “It’s up to the individual,” Dianne says. “People need to get as angry and ready to do battle as when polio was infecting our children.”
The organization informs volunteers on various strategies for raising awareness, and helps families and lobbies the government to pass bills like the Caroline Pryce Walker Conquer Childhood Cancer Act, which was put into action in 2008 to significantly increase funding for research.
Right now, the American Cancer Society, the largest nonprofit cancer-research organization, has enough money to fund only 10 percent of the research proposals it receives, according to Otis Brawley, M.D., the chief medical officer. Even the federal government’s National Cancer Institute funds only about 12 to 13 percent, he says.
The lack of funding has led members of Team Unite to some brazen techniques to get a little attention, including participating in 46 Mommas Shave for the Brave (46mommas.com), an event taking place this month that’s sponsored by St. Baldrick’s Foundation (StBaldricks.org), which funds more grants for childhood cancer research than any other organization outside the U.S. government. Heide will be one of the 46 mothers of children who are fighting or have fought cancer who are shaving their heads in hopes of garnering some air time for the cause.
Team Unite also creates support groups for families who feel alone and need compassion from those who understand, something the founders had trouble with when their children were suffering. The organization has built a network of “angels” who call or stop by each other’s houses to check in, mourn losses and celebrate victories, and to confront moments that will never evaporate from their lives.
Heide not only played an instrumental part in creating this system, she also depends on it. A web designer by trade, she maintains the expanding social network and websites that help tie the group together.
Her daughter, Jessica, was “your typical angst-ridden 15-year-old” when she suddenly suffered a seizure in 2006. A month later, doctors discovered she had a brain tumor. Despite attempts to beat the disease, growths appeared on her spine and brain stem eight months later, and a little more than a year after her cancer was diagnosed, Jessica, a talented writer, artist and photographer, died. While Team Unite is about helping others and future prevention, it’s also about personal survival — facing those darkest moments and creating something beautiful from them. Heide will never completely come to terms with Jessica’s death, but she has raised money, kept her daughter’s memory alive and provided comfort to others in her attempt to keep busy.
“I could lie in bed and read a book or play video games, but my mind always goes to ‘what if’ or to Jessica’s last moments,” she says. “I go to places I don’t want to go. I need to keep my mind busy. This helps.”
ETHAN ROUEN is a writer and an editor in New York.