Josh Danoff’s younger daughter, Tilly, was just two years old when doctors found a tumor pressing against her spinal cord. The two years that followed were a blur of doctor visits, chemotherapy appointments, tests, and treatments. It was an immensely trying time, but one of the things that lightened the load just a bit, Danoff says, was Lucy’s Love Bus.
The Amesbury-based charity provided grants that helped the family pay for complementary treatments, like chiropractor visits and craniosacral therapy, which helped Tilly deal with the effects of chemotherapy. The group also let Danoff and his wife, who live in Somerville, take their older daughter horseback riding, giving her valuable one-on-one moments with her parents during a time when so much of their attention was focused on her sister.
“I feel incredibly lucky that we have found such a supporting community to be a part of while going through probably the hardest thing myself or my wife has ever gone through,” Danoff says.
Lucy’s Love Bus was founded in 2006 by a family who understood all too well what Danoff is going through. Lucy Grogan was diagnosed with leukemia at the age of eight. During her treatments, the Amesbury community rallied around her family, raising money to help the family pay medical bills and cover household expenses. The financial support also allowed Lucy to receive acupuncture to help ease the nausea caused by chemotherapy.
Lucy, however, was sad to see that some of her fellow patients—her friends—were not able to experience the same relief because they didn’t have the money for such treatments. At age 11, six months before she died, Lucy came up with the idea of starting a charity that would help children with cancer access the complementary therapies that could help make their struggle a bit easier. She came up with the name Lucy’s Love Bus to suggest the way the organization would provide care.
“The idea was that it would deliver comfort to kids with cancer,” says Jackie Walker, executive director of the organization. In 2011, a benefactor donated an actual 1970 Volkswagen bus, which the organization restored and painted to resemble a butterfly, the symbol of the group, but it has never been used to provide care. “It’s more of a mascot,” Walker says.
Today, Lucy’s Love Bus provides funding to any child diagnosed with cancer before age 21 who lives or is treated in New England. The grants can be used toward therapies and treatments that fall outside the realm of conventional medicine. The list includes options like acupuncture, massage, reiki, art therapy, and nutritional counseling. Far and away the most popular, however, is therapeutic horseback riding, Walker says.
Recipients get an initial grant of $1,000 for their first year in the program, then $500 each year after that. They never age out: The annual grants are available as long as the patient still needs support during treatment or to deal with the long-term effects of the illness. “They’re not forced to make a choice between something that will relieve their pain or anxiety now and something that will be fun later,” Walker says.
Since Lucy’s Love Bus began, it has served more than 2,500 patients. In recent years the organization has also expanded its offerings to provide support for patients’ siblings and caregivers. In support of this ever-expanding mission, the organization will be hosting its first ever “Butterfly Benefit” on May 10, replacing its previous annual fundraising skydiving outing. The event will include live music, a children’s art exhibit, and comments by families who have benefited from Lucy’s Love Bus.
For the Danoff family, it is a great comfort to know Lucy’s Love Bus will continue to be there for them. Tilly’s tumor is likely to be a chronic condition until she reaches her 20s, so there are many years of uncertainty ahead, Danoff says. “There’s a lot that’s unknown,” he says. “It feels great that there’s an organization that will be with us for the journey.”
Tickets for the Butterfly Benefit go on sale on March 1. Buy your tickets online at give.lucyslovebus.org/butterflybenefit23.