The Quality of Mercy
Kate Eastman ’82 helps critically ill children and their families face finality.
By Virginia Wright
The strapping high school athlete from Katy, Texas, had been bothered by hip pain while training for the 1989 fall football season. It was not, he’d just learned, merely tendonitis. The bone cancer he’d battled two years earlier at age 15 was back.
Kate Eastman ’82 sidled up to the teenager on the sofa. “Jason, my name’s Katie and I’ve been assigned to be your social worker,” she said. “I’m here to help you with anything you need to get through this process.”
Jason took his eyes off the television just long enough to offer Eastman a polite “Hi!”
“Jason,” Eastman continued, “this must be a really hard time for you….”
“Actually,” Jason replied, “I’m enjoying this. It’s really a great show.” “Well…but isn’t this tough for you?” Eastman persisted. “I know this could really be a struggle for you and your family.”
“Yeah, sometimes I have football practice and it’s hard to get over here in time.” Not even looking at her this time.
By now, Fred and Timmy Debusk, the only other people in the room, were peering over their books, wondering if their son needed rescuing. “We have church support,” Fred said. “We’re doing just fine.”
This was not the scenario that Eastman, then 29, had envisioned when she decided to work with terminally ill children and teenagers. Nor were her next several encounters with Jason at M.D. Anderson Cancer Center in Houston. Jason managed to be asleep whenever Kate Eastman came around. “Mom, that woman is really weird,” he’d tell Timmy later.
But Kate Eastman is stubborn. One morning she followed Jason and his family into chemotherapy, where she knew he couldn’t escape. Time to clear the air. “Jason, I get the feeling you’re trying to avoid me. What’s wrong?”
Embarrassed, Jason looked at Timmy. “Mom! You told her!” Timmy laughed and shook her head. “Well,” Jason sighed, “if you must know, your death and dying questions really get on my nerves.”
Eastman was stumped. This was not in her textbooks.
“Jason, I’m a student,” she confided. “I don’t know how to do this. Teach me.”
On a recent dark December afternoon, Kate Eastman and Terry Fitzgerald pick through a box of toys in a small living room in Springvale, Maine. The gifts, sent by talk show host Rosie O’Donnell, are for Terry’s son, Thomas, a willowy 13-year-old with autism and cerebral palsy who reclines on the floor, poking intently at the tiny cars he loves as much as he loves Rosie. He burps softly and his mom gives him a thumb’s up. “You go, guy!” she says, smiling. Until recently, Thomas had never burped, aggravating an intestinal disorder that has landed him in the emergency room many times.
Eastman asks Terry, a single mother who also cares for an 8-year-old daughter and her disabled mother, how things are going. The answer is so-so. A school aide has been complaining about having to change Thomas’ diaper too often. His foot is turning in. He needs physical therapy. He needs leg braces.
“Why can’t Rosie pay for the braces?” Eastman suggests, looking at the letter that accompanied the toys. “This says to get in touch if there’s anything else you need.”
Terry shrugs. Rosie’s charity has already promised an expensive motorized wheelchair. “I don’t think I could ask,” she says with a sheepish smile.
“Do you want me to?” Eastman asks. “Seriously, you want me to?” With bejeweled fingers (“Turquoise is a symbol for power, but I also just like turquoise”), she dials Rosie’s assistant, thanks her for the toys and makes her pitch. She listens, then repeats what she is being told: “You have thousands of requests….” Undeterred, Eastman says braces might help Thomas more than a wheelchair; could they substitute? Too late. The wheelchair has already been purchased. Eastman thanks the assistant and hangs up. Without missing a beat, she meets Terry’s eyes. “Maybe the Rotary….”
Kate Eastman – Dr. Kate Eastman now, with a degree in clinical psychology from Antioch New England – has learned a thing or two about helping since meeting Jason Debusk 12 years ago. She is the founder of the two-year-old Jason Program, which provides medical care, emotional and spiritual comfort, and help meeting the daily basics of critically ill children and their families. It is the state’s only comprehensive end-of-life care program for children and its unusual integration of services makes it a national model. Its annual conference on pediatric hospice draws hundreds of professionals to Maine each spring.
Burdened by the myth that few children die – in fact, Eastman says, one to three children die from illness each week in Maine alone – kids have typically been served in adult hospice settings. Most of those programs only admit patients who have six months or less to live. Eastman rejects those criteria. The nonprofit Jason Program is available to any child who is critically ill and not expected to live to adulthood.
Cancer is the perpetrator in about one-quarter of life-threatening childhood illnesses. The vast majority of terminally ill children have less known conditions. Three of the Jason Program’s 11 clients, for example, have mitochondrial disease, a genetic defect in cells’ ability to produce energy that eventually leaves the child unable to walk, sit up unassisted, see, speak, or even eat and digest food. One such child is bright-eyed Michaela Gaetjens, the 8-year-old daughter of Theresa and Ray. Michaela uses an expensive adaptive wheelchair that helps support her body and head; without it, she would slump over.
A 13-year-old girl with muscular dystrophy chose to forego a feeding tube, ventilator, or other extraordinary efforts to sustain her withering body. For Halloween, she was “an angel with attitude”; the next day she died.
“These kids are sick for a really long time,” Eastman says. “Imagine having a 6-month-old baby for eight years. That’s what it’s like: changing a 10-year-old’s diapers, having to carry a 13-year-old, all the work you put into a 6-month-old baby’s life, continuing for years. The parents get tired. Why should they have to wait until their child is on a deathbed before they get the support they need?”
The Jason Program team includes a physician, nurse, chaplain, medical social worker, and a volunteer child life specialist, who plays with the children so their parents have time for laundry, grocery shopping, or paying the bills. As “the mother of the program” and the only full-time employee, Eastman, 41, is its executive director and social worker, not to mention office assistant, chief fund raiser, and volunteer coordinator. As the program grows – the goal is to serve families statewide – Eastman hopes to delegate duties that now keep her busy 12 hours a day.
Unique is the Jason Program’s effort to create community networks that help families with the basics of daily living, a reflection of the support Eastman saw rallied on behalf of Jason Debusk and his family in Katy. “In Maine, we have what I call the baked-bean phenomenon. When there’s crisis, people bring baked beans. But baked beans don’t really help the family,” she says. “A lot of times these families have concrete needs: clothing, food, transportation, things we take for granted like who’s going to mow the lawn, who’s going to plow the driveway, who’s going to let out the dog, who’s going to get groceries.”
The Jason Program coordinates the community’s desire to help with the family’s needs, so the family can focus on the ailing child. On this afternoon in Springvale, Eastman tells Terry Fitzpatrick that local firemen have volunteered to build a wheelchair ramp for Thomas. A church group in Old Orchard Beach 25 miles away has agreed to provide meals. Eastman herself will ferry the meals so the Fitzpatricks’ privacy remains intact.
“It’s as if the sky opened up and sent me an angel,” Fitzpatrick says. “Katie came into my life at just the right time. She’s my voice. She’s my brain.”
Twenty-two years ago, God spoke to Kate Eastman while she was sitting on a bench in the Bates College quad. “The voice was very specific: ‘You will start a pediatric hospice in Maine,’ Eastman says. “I remember thinking: Huh? What? Me? I believed the voice to be that of God and that this was what I was called to do.”
The message was not entirely out of the blue. Eastman, an interdisciplinary religion and history major who hoped to have a counseling ministry, had just read On Death and Dying, the classic study of grief by Elisabeth Kübler-Ross. A frequent volunteer in programs for teenagers, Eastman had been ruminating on how children cope with imminent death.
Even as a child, she showed unusual compassion. As a 6-year-old, she stopped her father from photographing a homeless man lying on a bench in Central Park. “Daddy! That’s his home!” she scolded. Mostly though, her father was a fine model of altruism. A lawyer, he offered free legal services to the poor every Saturday in their hometown of Burlington, Vt. He took Kate to visit the residents of local nursing homes, and he regularly delivered doughnuts to the Salvation Army and rang the charity’s bell at Christmas. And while Kate’s parents didn’t go to church themselves, they did not stand in her way when she wanted to explore her spirituality.
She counts among her influences professors Tom Tracy and the late Geoff Law. “The biggest joke at Bates was, ‘What does Tom Tracy really believe?’” she recalls. “It didn’t matter, because his spirit came through and that’s what inspired me. He taught in a way that freed my mind and opened my heart to whatever I wanted to believe. Geoff Law was the same way. Through his life, he reflected a loving spirit in his actions and his deeds.”
Issues raised in the classroom often spilled into heated debates between Eastman and a friend, John Walker ’81. Eastman remembers the arguments with fondness now, but at the time the challenges to her faith moved her to tears. “One day John told me, ‘You’re nothing but a Christian on a white horse.’ I cried and cried, but he was so right. He challenged my innocent faith and made it a more mature faith.” To this day, she does not question grieving families who rail at God. “John taught me, don’t be giving people this God stuff when they’re in grief. You can’t be a Christian on a white horse, telling people what’s going to get them through it, but you can sit with them and let them figure it out. That’s part of mature faith: being able to sit with the not knowing and the misunderstanding and the anger and the sadness and the pain.”
Social worker Roberta Wentworth, Eastman’s mentor at a Sanford mental health agency that employed her after graduation, remembers a young woman whose intensity and passion were palpable. “When you walked into a room where she was speaking, you felt her energy,” she says. “We were working with people with chronic and severe mental illness, and I was doing a lot of work around grief and loss. Lots of people Katie’s age would say, ‘I don’t know how you can do that.’ But Katie said, ‘That’s something I want to do.’ You could almost say she had a calling.”
On Wentworth’s advice, Eastman took a respite from social work, dabbling briefly in interior decorating. “She had so much energy I was afraid that if she didn’t step back and mature she’d burn. She had the vision and the dream, but to make that come true you have to have the wisdom that comes with maturity and loss and pain – and she has that now.”
In the years that followed, Eastman would marry, divorce, remarry and suffer three miscarriages. She also would meet her greatest teacher, Jason Debusk.
Jason lived for two-and-a-half years after being told he had terminal Ewing’s sarcoma. His mother, Timmy, calls that a miracle. “He lived longer than we expected and we made the most of it,” she says.
The person who helped them do that was the earnest but awkward social worker who got between Jason and Family Feud in a hospital lounge 12 years ago.
Kate Eastman had come to Texas via Boston University, where she met her first husband, a minister, while she pursued a master’s in theology. She followed him to Houston, looking for signs of her vision as she drove into the city. She saw them right away: M.D. Anderson Cancer Center and the Houston Hospice, where she would complete her practicum while earning her master’s in social work at the University of Houston.
Optimistic and spirited, Jason was delighted when Eastman asked him to show how she could support him and his family. “I had been way too serious,” she says. “He didn’t know me and here I was, asking all of these deep questions. His greatest lesson was for me to be his friend and allow him to talk about what he wanted.”
Though Eastman describes the community support that mobilized around Jason and his family as spontaneous, Timmy Debusk remembers it differently. The town of Katy rallied behind its star football player, but Eastman organized everything so the Debusks got relevant help. “Katie was there to think clearly for me,” Timmy says. “She encouraged us to accept the help people wanted to give. When I’d say, ‘This is more than I can cope with,’ she’d offer ways for me to cope.”
Eastman became Jason’s agent, arranging for him to talk to youth groups about his life and the power of faith, a role that he relished. She tracked down a pain specialist, who determined that a person with Jason’s type of cancer needed 10 times the amount of morphine Jason was receiving. “Having Katie there to help in all these ways made it easier for Jason to live to the fullest the life he had left,” Timmy says.
Eventually, Eastman and Jason did talk about his impending death, and she visited him the day doctors told him there was nothing more they could do to try to save him.
“They’re doctors,” he said. “There’s always something they can do.”
“J,” Eastman said gently, “there’s nothing more that they can do.”
Jason rolled over in his bed and cried. It is a moment, as he squarely faced death, that Eastman now calls sacred.
Timmy Debusk believes God blessed her family with Katie Eastman. “The thing that she helped us with more than anything was to hold onto our spiritual convictions. We wanted the medical treatment, but we also knew there was a greater source of strength. We did not give up hope that miracles would happen – and miracles did happen. We prayed so hard to have Jason get better and we just know that this was how God answered our prayers.”
Timmy speaks of Jason in the present tense, for she knows he is right behind his friend Katie Eastman and “proud as punch” of the Jason Program. Today, with his help, she is showing the dying how to live.
Virginia Wright is a free-lance writer who lives in Cumberland, Maine.