乐播传媒

Kate Eastman ’82 helps critically ill children and their families face finality.

By Virginia Wright

Jason Debusk was dying, but he wasn鈥檛 about to let that get between him and Family Feud. Death was at least five weeks away, so Debusk鈥檚 immediate obstacle was the way-too-eager social worker who had entered the hospital lounge where he was watching his favorite game show.

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鈥檇 just learned, merely tendonitis. The bone cancer he鈥檇 battled two years earlier at age 15 was back.

Kate Eastman 鈥�82 sidled up to the teenager on the sofa. 鈥淛ason, my name鈥檚 Katie and I鈥檝e been assigned to be your social worker,鈥� she said. 鈥淚鈥檓 here to help you with anything you need to get through this process.鈥�

Jason took his eyes off the television just long enough to offer Eastman a polite 鈥淗i!鈥�

鈥淛ason,鈥� Eastman continued, 鈥渢his must be a really hard time for you鈥�.鈥�

鈥淎ctually,鈥� Jason replied, 鈥淚鈥檓 enjoying this. It鈥檚 really a great show.鈥澛� 聽聽 聽聽聽 鈥淲ell鈥�but isn鈥檛 this tough for you?鈥� Eastman persisted. 鈥淚 know this could really be a struggle for you and your family.鈥�

鈥淵eah, sometimes I have football practice and it鈥檚 hard to get over here in time.鈥� 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. 鈥淲e have church support,鈥� Fred said. 鈥淲e鈥檙e doing just fine.鈥�

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. 鈥淢om, that woman is really weird,鈥� he鈥檇 tell Timmy later.

But Kate Eastman is stubborn. One morning she followed Jason and his family into chemotherapy, where she knew he couldn鈥檛 escape. Time to clear the air. 鈥淛ason, I get the feeling you鈥檙e trying to avoid me. What鈥檚 wrong?鈥�

Embarrassed, Jason looked at Timmy. 鈥淢om! You told her!鈥� Timmy laughed and shook her head. 鈥淲ell,鈥� Jason sighed, 鈥渋f you must know, your death and dying questions really get on my nerves.鈥�

Eastman was stumped. This was not in her textbooks.

鈥淛ason, I鈥檓 a student,鈥� she confided. 鈥淚 don鈥檛 know how to do this. Teach me.鈥�

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鈥橠onnell, are for Terry鈥檚 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鈥檚 up. 鈥淵ou go, guy!鈥� 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鈥� diaper too often. His foot is turning in. He needs physical therapy. He needs leg braces.

鈥淲hy can鈥檛 Rosie pay for the braces?鈥� Eastman suggests, looking at the letter that accompanied the toys. 鈥淭his says to get in touch if there鈥檚 anything else you need.鈥�

Terry shrugs. Rosie鈥檚 charity has already promised an expensive motorized wheelchair. 鈥淚 don鈥檛 think I could ask,鈥� she says with a sheepish smile.

鈥淒o you want me to?鈥� Eastman asks. 鈥淪eriously, you want me to?鈥� With bejeweled fingers (鈥淭urquoise is a symbol for power, but I also just like turquoise鈥�), she dials Rosie鈥檚 assistant, thanks her for the toys and makes her pitch. She listens, then repeats what she is being told: 鈥淵ou have thousands of requests鈥�.鈥� 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鈥檚 eyes. 鈥淢aybe the Rotary鈥�.鈥�

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鈥檚 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鈥檚 11 clients, for example, have mitochondrial disease, a genetic defect in cells鈥� 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 鈥渁n angel with attitude鈥�; the next day she died.

鈥淭hese kids are sick for a really long time,鈥� Eastman says. 鈥淚magine having a 6-month-old baby for eight years. That鈥檚 what it鈥檚 like: changing a 10-year-old鈥檚 diapers, having to carry a 13-year-old, all the work you put into a 6-month-old baby鈥檚 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?鈥�

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 鈥渢he mother of the program鈥� 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鈥檚 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. 鈥淚n Maine, we have what I call the baked-bean phenomenon. When there鈥檚 crisis, people bring baked beans. But baked beans don鈥檛 really help the family,鈥� she says. 鈥淎 lot of times these families have concrete needs: clothing, food, transportation, things we take for granted like who鈥檚 going to mow the lawn, who鈥檚 going to plow the driveway, who鈥檚 going to let out the dog, who鈥檚 going to get groceries.鈥�

The Jason Program coordinates the community鈥檚 desire to help with the family鈥檚 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鈥� privacy remains intact.

鈥淚t鈥檚 as if the sky opened up and sent me an angel,鈥� Fitzpatrick says. 鈥淜atie came into my life at just the right time. She鈥檚 my voice. She鈥檚 my brain.鈥�

Twenty-two years ago, God spoke to Kate Eastman while she was sitting on a bench in the 乐播传媒 College quad. 鈥淭he voice was very specific: 鈥榊ou will start a pediatric hospice in Maine,鈥� Eastman says. 鈥淚 remember thinking: Huh? What? Me? I believed the voice to be that of God and that this was what I was called to do.鈥�

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 K眉bler-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. 鈥淒addy! That鈥檚 his home!鈥� 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鈥檚 bell at Christmas. And while Kate鈥檚 parents didn鈥檛 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. 鈥淭he biggest joke at 乐播传媒 was, 鈥榃hat does Tom Tracy really believe?鈥欌�� she recalls. 鈥淚t didn鈥檛 matter, because his spirit came through and that鈥檚 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.鈥�

Issues raised in the classroom often spilled into heated debates between Eastman and a friend, John Walker 鈥�81. Eastman remembers the arguments with fondness now, but at the time the challenges to her faith moved her to tears. 鈥淥ne day John told me, 鈥榊ou鈥檙e nothing but a Christian on a white horse.鈥� I cried and cried, but he was so right. He challenged my innocent faith and made it a more mature faith.鈥� To this day, she does not question grieving families who rail at God. 鈥淛ohn taught me, don鈥檛 be giving people this God stuff when they鈥檙e in grief. You can鈥檛 be a Christian on a white horse, telling people what鈥檚 going to get them through it, but you can sit with them and let them figure it out. That鈥檚 part of mature faith: being able to sit with the not knowing and the misunderstanding and the anger and the sadness and the pain.鈥�

Social worker Roberta Wentworth, Eastman鈥檚 mentor at a Sanford mental health agency that employed her after graduation, remembers a young woman whose intensity and passion were palpable. 鈥淲hen you walked into a room where she was speaking, you felt her energy,鈥� she says. 鈥淲e 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鈥檚 age would say, 鈥業 don鈥檛 know how you can do that.鈥� But Katie said, 鈥楾hat鈥檚 something I want to do.鈥� You could almost say she had a calling.鈥�

On Wentworth鈥檚 advice, Eastman took a respite from social work, dabbling briefly in interior decorating. 鈥淪he had so much energy I was afraid that if she didn鈥檛 step back and mature she鈥檇 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.鈥�

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鈥檚 sarcoma. His mother, Timmy, calls that a miracle. 鈥淗e lived longer than we expected and we made the most of it,鈥� 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鈥檚 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鈥檚 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. 鈥淚 had been way too serious,鈥� she says. 鈥淗e didn鈥檛 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.鈥�

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. 鈥淜atie was there to think clearly for me,鈥� Timmy says. 鈥淪he encouraged us to accept the help people wanted to give. When I鈥檇 say, 鈥楾his is more than I can cope with,鈥� she鈥檇 offer ways for me to cope.鈥�

Eastman became Jason鈥檚 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鈥檚 type of cancer needed 10 times the amount of morphine Jason was receiving. 鈥淗aving Katie there to help in all these ways made it easier for Jason to live to the fullest the life he had left,鈥� 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.

鈥淭hey鈥檙e doctors,鈥� he said. 鈥淭here鈥檚 always something they can do.鈥�

鈥淛,鈥� Eastman said gently, 鈥渢here鈥檚 nothing more that they can do.鈥�

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. 鈥淭he 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.鈥�

Timmy speaks of Jason in the present tense, for she knows he is right behind his friend Katie Eastman and 鈥減roud as punch鈥� 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.