By Marshal D. Haneisen
Six weeks before her death, Lucy Grogan had a dream: to offer comfort and quality of life to children facing critical illnesses. From her hospital bed, the 11-year-old outlined a mission that her mother continues today, one that has raised thousands of dollars and aided more than 750 children with cancer.
Based in Amesbury, Lucy's Love Bus funds several programs for critically ill pediatric patients throughout New England and funds integrative therapies, such as horseback riding, massage, acupuncture, and art.
The organization launched in January 2006 from Lucy's hospital bed. Diagnosed with acute myeloid leukemia at age 8, she benefited from a range of integrative therapies like her namesake organization funds today. She couldn't understand why her fellow patients weren't asking for therapies like those she enjoyed, said Beecher Grogan, Lucy's mom and co-founder and executive director of Lucy's Love Bus. Grogan told her daughter that their community, friends, and family had donated money to pay for the therapies, which surprised the girl, who assumed they were covered under insurance.
During her cancer fight, Lucy experienced not only the pain of treatment, but also the loss of 22 friends to the disease by the time she was 11. It was a hurt that focused her goal.
"We kept in touch with all these families, many of whom were raising money for a cure for cancer. But one day Lucy said to me, 'What about us? A cure is not going to help us,'" Grogan recalled.
She voiced a reality that for many, cures will come too late, and switched her goal to her peers' immediate quality of life and comfort.
"What was important for Lucy is for the kids to be able to not throw up, to run around, and to be reminded of what it is like to be a happy, healthy kid, even for a short period of time," Grogan said.
This began Lucy's Love Bus, a name Lucy chose "because she wanted her program to deliver love, comfort, and quality of life to children with cancer," Grogan said. The organization received a donated 1970 VW bus. Volunteers raised money to renovate and decorate it to create the official Lucy's Love Bus, which appears in parades, expos, and fundraising events to promote the organization and its mission.) A mother's mourning After Lucy passed in July 2006, Grogan held off making her daughter's dream a reality, instead focusing on processing her loss and grieving. She put the remaining $2,000 family and friends raised for Lucy's therapies, along with donations made after her death, into a CD for three years and waited.
"I always caution people against doing something immediately after the child dies. It is a bad time to start a business, you need to go through the grief process," she said.
For three years, Grogan struggled with her grief and saw that Lucy's friends were struggling, too.
"I went to a New Year's Eve party at her best friend's house. I was downstairs with the parents and very uncomfortable; people didn't know how to behave around me. So, I went up to where the kids were and squeezed between two of her friends. We talked about Lucy's Love Bus, and I asked the kids what should we do? Do they want to help? They all said yes -- they were the original Love Squad," Grogan said.
In 2010, with the help of three moms, 15 kids between the ages of 12 and 15, and Amesbury Skate and Sport, Lucy's Love Bus organized its first event, a grassroots music festival, where they released thousands of Monarch butterflies.
"We held a T-shirt design competition for kids, and printed up hundreds of white T-shirts with the two winning designs," Grogan added.
The festival raised $57,000. Lucy's Love Bus began paying for integrative therapies such as massage, acupuncture, yoga, horse-riding, swimming, and music for pediatric oncology patients in hospitals.
For example, this past summer, Lucy's Love Bus helped cover some of the costs of a summer program for Spencer, a 5-year-old Colchester, VT, boy who is in treatment for acute lymphoblastic leukemia.
"We wanted to give him a sense of normalcy, he missed out on so much. For the weeks of summer camp, he got to be a 5-year-old," said Nicole LaBonte, Spencer's mom. "To this day, he still talks about camp. It was scary at first, it kicked his butt, but he was happy. Him going to that program was more than I could give him at home."
Spencer hopes to return to summer camp again, and he now attends an afterschool program with some of the camp counselors. Lucy's Love Bus helped to build his network, LaBonte said. The Healing Room One day, Grogan learned through social workers that some people hold a level of resentment that "The cancer kids get everything." The social worker explained that for families of children living with other diagnoses and rare conditions, there are fewer supports and programs to help.
"With every decision, I think, 'What would Lucy, at age 12, want?" Grogan explained. "Lucy was clear in her mission: She wanted to help all the kids."
In response, Lucy's Love Bus developed a program for hospitals called The Healing Room, which allows more patients access to some of the therapies that were so important to its namesake. The Healing Room is not an actual room, but rather an intention to create room for healing.
Through the organization's funding, practitioners visit hospitals and provide therapies such as bedside massage, meditation, and music therapy. Therapists can help several children in one visit, and if it is a quiet day and there are few children, they can offer therapies to a patient's parents or siblings. Lucy's Love Bus hosts The Healing Room at three New England hospitals: Tufts Medical Center Floating Hospital for Children in Boston, UVMMC Children's Hospital in Burlington, VT, and Barbara Bush Children's Hospital in Portland, Maine. The Love Bus enters the classroom The youngest members of the original Love Squad are now in college, and Lucy's peers have graduated. But Grogan is committed to the longevity of the program and began partnering with schools to grow Lucy's LoveSquad School Program.
In 2014, Johnny Appleseed School in Leominster partnered with the organization for the first Lucy's LoveSquad School Program. Grogan visits participating schools and facilitates a group discussion on nonprofits and philanthropy with an entire grade, with the intention of returning to the same children annually as they graduate from grade to grade. They talk about different ways nonprofits receive money, such as through fundraising and donations. Grogan shares Lucy's story and talks with the students about the children Lucy's Love Bus helps. She then asks if they want to raise funds for a child. Inevitably, they all want to help. They brainstorm ways they can raise money for their buddy, with a goal of $1,000 over a four- to six-week period for elementary-aged groups; high school groups aim to raise more over an entire year.
To date, Lucy's LoveSquad School Program has partnered with 37 schools in Massachusetts, Maine, New Hampshire, and Vermont. This year, school partnerships have raised $27,000. The LoveSquad School Program is a huge empathy builder, Grogan notes.
Now 6, Thiago Molinari of Fitchburg was diagnosed with childhood leukemia when he was 3. Thiago's mom, Gabriela, closed her daycare when her son was diagnosed, which caused him to grow lonely as he had no one to play with. A partnership with Johnny Appleseed School in Leominster and the Lucy's LoveSquad School Program changed that.
"We learned about the program through UMass Medical Center, where Thiago receives medical care. The social worker told us about Lucy's Love Bus and encouraged us to apply. Thiago was having a hard time with treatment and he was really sad," she said.
Gabriela and her husband wanted Thiago to do something fun. They knew he liked water, so much in fact, they were often worried because he wasn't afraid of water, yet could not swim. When they learned that Lucy's Love Bus would help fund swimming lessons, they applied and were approved right away. Thiago was assigned to Johnny Appleseed School as its LoveSquad Butterfly Buddy.
Grogan contacted Molinari and said the kids at Johnny Appleseed School wanted to meet their hero. Molinari was so impressed with the empathy and care she saw in the school, she exercised her right to school choice Thiago and have him attend Johnny Appleseed School.
"If Beecher had not told me to go meet the kids, we would not have found that school. It was meant to be," Molinari said. "Lucy's Love Bus is everything to us. They helped us in the hardest part of our life. They helped Thiago through the hardest part of his treatment. They helped him to not be afraid. The helped him to be a child, and he learned how to swim."
This summer, Thiago ran a lemonade stand to raise funds for Lucy's Love Bus, and raised more than $800. Continuing its mission The most critical need for Lucy's Love Bus is funding. The program recently hired a third staff member and is in the process of moving the operation from Grogan's home into an office. She hopes the office will also include space to provide group therapy for children and adults. In two to three years, Grogan intends for the organization to have a house and 5 acres of land to support on-site outdoor therapies. Donations to Lucy's Love Bus can be made through its website.
Volunteer support is always welcome, whether manning a table at an event or writing the many thank you cards the organizations sends to express appreciation for donations.
Grogan is looking to partner with more schools via Lucy's LoveSquad School Program, as well as corporations, where a $7,000 contribution can fund one full year of therapy in a hospital, she said.
Marshal D. Haneisen is a freelance journalist, writer, and creative writing instructor. She lives in Fitchburg with her husband, son, and a variety of pets. Her son has a dual-diagnosis of Down syndrome and autism, and her experience as a parent of a child with special needs inspires some of her writing for various publications, as well as for her blog, thespecialneedsfiles.com. Information about Marshal's writing and workshops can be found marshaldhaneisen.com.