{"id":3866,"date":"2010-04-21T18:07:38","date_gmt":"2010-04-21T18:07:38","guid":{"rendered":"http:\/\/hub-dev.bates.edu\/magazine\/?page_id=3866"},"modified":"2017-09-06T11:44:41","modified_gmt":"2017-09-06T15:44:41","slug":"the-quality-of-mercy","status":"publish","type":"page","link":"https:\/\/www.bates.edu\/magazine\/back-issues\/y2002\/winter02\/features\/the-quality-of-mercy\/","title":{"rendered":"The Quality of Mercy"},"content":{"rendered":"
\n

Kate Eastman ’82 helps critically ill children and their families face finality.<\/h3>\n

By Virginia Wright<\/p>\n<\/div>\n

\"\"Jason Debusk was dying, but he wasn\u2019t about to let that get between him and Family Feud<\/em>. Death was at least five weeks away, so Debusk\u2019s immediate obstacle was the way-too-eager social worker who had entered the hospital lounge where he was watching his favorite game show.<\/p>\n

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\u2019d just learned, merely tendonitis. The bone cancer he\u2019d battled two years earlier at age 15 was back.<\/p>\n

Kate Eastman \u201982 sidled up to the teenager on the sofa. \u201cJason, my name\u2019s Katie and I\u2019ve been assigned to be your social worker,\u201d she said. \u201cI\u2019m here to help you with anything you need to get through this process.\u201d<\/p>\n

Jason took his eyes off the television just long enough to offer Eastman a polite \u201cHi!\u201d<\/p>\n

\u201cJason,\u201d Eastman continued, \u201cthis must be a really hard time for you\u2026.\u201d<\/p>\n

\u201cActually,\u201d Jason replied, \u201cI\u2019m enjoying this. It\u2019s really a great show.\u201d\u00a0 \u00a0\u00a0 \u00a0\u00a0\u00a0 \u201cWell\u2026but isn\u2019t this tough for you?\u201d Eastman persisted. \u201cI know this could really be a struggle for you and your family.\u201d<\/p>\n

\u201cYeah, sometimes I have football practice and it\u2019s hard to get over here in time.\u201d Not even looking at her this time.<\/p>\n

By now, Fred and Timmy Debusk, the only other people in the room, were peering over their books, wondering if their son needed rescuing. \u201cWe have church support,\u201d Fred said. \u201cWe\u2019re doing just fine.\u201d<\/p>\n

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. \u201cMom, that woman is really weird,\u201d he\u2019d tell Timmy later.<\/p>\n

But Kate Eastman is stubborn. One morning she followed Jason and his family into chemotherapy, where she knew he couldn\u2019t escape. Time to clear the air. \u201cJason, I get the feeling you\u2019re trying to avoid me. What\u2019s wrong?\u201d<\/p>\n

Embarrassed, Jason looked at Timmy. \u201cMom! You told her!\u201d Timmy laughed and shook her head. \u201cWell,\u201d Jason sighed, \u201cif you must know, your death and dying questions really get on my nerves.\u201d<\/p>\n

Eastman was stumped. This was not in her textbooks.<\/p>\n

\u201cJason, I\u2019m a student,\u201d she confided. \u201cI don\u2019t know how to do this. Teach me.\u201d<\/p>\n

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\u2019Donnell, are for Terry\u2019s 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\u2019s up. \u201cYou go, guy!\u201d she says, smiling. Until recently, Thomas had never burped, aggravating an intestinal disorder that has landed him in the emergency room many times.<\/p>\n

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\u2019 diaper too often. His foot is turning in. He needs physical therapy. He needs leg braces.<\/p>\n

\u201cWhy can\u2019t Rosie pay for the braces?\u201d Eastman suggests, looking at the letter that accompanied the toys. \u201cThis says to get in touch if there\u2019s anything else you need.\u201d<\/p>\n

Terry shrugs. Rosie\u2019s charity has already promised an expensive motorized wheelchair. \u201cI don\u2019t think I could ask,\u201d she says with a sheepish smile.<\/p>\n

\u201cDo you want me to?\u201d Eastman asks. \u201cSeriously, you want me to?\u201d With bejeweled fingers (\u201cTurquoise is a symbol for power, but I also just like turquoise\u201d), she dials Rosie\u2019s assistant, thanks her for the toys and makes her pitch. She listens, then repeats what she is being told: \u201cYou have thousands of requests\u2026.\u201d 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\u2019s eyes. \u201cMaybe the Rotary\u2026.\u201d<\/p>\n

Kate Eastman – Dr.<\/em> 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\u2019s 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.<\/p>\n

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.<\/p>\n

Cancer is the perpetrator in about one-quarter of life-threatening childhood illnesses.<\/strong> The vast majority of terminally ill children have less known conditions. Three of the Jason Program\u2019s 11 clients, for example, have mitochondrial disease, a genetic defect in cells\u2019 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.<\/p>\n

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 \u201can angel with attitude\u201d; the next day she died.<\/p>\n

\u201cThese kids are sick for a really long time,\u201d Eastman says. \u201cImagine having a 6-month-old baby for eight years. That\u2019s what it\u2019s like: changing a 10-year-old\u2019s diapers, having to carry a 13-year-old, all the work you put into a 6-month-old baby\u2019s 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?\u201d<\/p>\n

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 \u201cthe mother of the program\u201d 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.<\/p>\n

Unique is the Jason Program\u2019s 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. \u201cIn Maine, we have what I call the baked-bean phenomenon. When there\u2019s crisis, people bring baked beans. But baked beans don\u2019t really help the family,\u201d she says. \u201cA lot of times these families have concrete needs: clothing, food, transportation, things we take for granted like who\u2019s going to mow the lawn, who\u2019s going to plow the driveway, who\u2019s going to let out the dog, who\u2019s going to get groceries.\u201d<\/p>\n

The Jason Program coordinates the community\u2019s desire to help with the family\u2019s 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\u2019 privacy remains intact.<\/p>\n

\u201cIt\u2019s as if the sky opened up and sent me an angel,\u201d Fitzpatrick says. \u201cKatie came into my life at just the right time. She\u2019s my voice. She\u2019s my brain.\u201d<\/p>\n

Twenty-two years ago, God spoke to Kate Eastman while she was sitting on a bench in the Bates College quad. \u201cThe voice was very specific: \u2018You will start a pediatric hospice in Maine,\u2019 Eastman says. \u201cI remember thinking: Huh? What? Me?<\/em> I believed the voice to be that of God and that this was what I was called to do.\u201d<\/p>\n

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,<\/em> the classic study of grief by Elisabeth K\u00fcbler-Ross. A frequent volunteer in programs for teenagers, Eastman had been ruminating on how children cope with imminent death.<\/p>\n

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. \u201cDaddy! That\u2019s his home!\u201d 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\u2019s bell at Christmas. And while Kate\u2019s parents didn\u2019t go to church themselves, they did not stand in her way when she wanted to explore her spirituality.<\/p>\n

She counts among her influences professors Tom Tracy and the late Geoff Law. \u201cThe biggest joke at Bates was, \u2018What does Tom Tracy really believe?\u2019\u201d she recalls. \u201cIt didn\u2019t matter, because his spirit came through and that\u2019s 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.\u201d<\/p>\n

Issues raised in the classroom often spilled into heated debates between Eastman and a friend, John Walker \u201981. Eastman remembers the arguments with fondness now, but at the time the challenges to her faith moved her to tears. \u201cOne day John told me, \u2018You\u2019re nothing but a Christian on a white horse.\u2019 I cried and cried, but he was so right. He challenged my innocent faith and made it a more mature faith.\u201d To this day, she does not question grieving families who rail at God. \u201cJohn taught me, don\u2019t be giving people this God stuff when they\u2019re in grief. You can\u2019t be a Christian on a white horse, telling people what\u2019s going to get them through it, but you can sit with them and let them figure it out. That\u2019s part of mature faith: being able to sit with the not knowing and the misunderstanding and the anger and the sadness and the pain.\u201d<\/p>\n

Social worker Roberta Wentworth, Eastman\u2019s mentor at a Sanford mental health agency that employed her after graduation, remembers a young woman whose intensity and passion were palpable. \u201cWhen you walked into a room where she was speaking, you felt her energy,\u201d she says. \u201cWe 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\u2019s age would say, \u2018I don\u2019t know how you can do that.\u2019 But Katie said, \u2018That\u2019s something I want to do.\u2019 You could almost say she had a calling.\u201d<\/p>\n

On Wentworth\u2019s advice, Eastman took a respite from social work, dabbling briefly in interior decorating. \u201cShe had so much energy I was afraid that if she didn\u2019t step back and mature she\u2019d 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.\u201d<\/p>\n

In the years that followed, Eastman would marry, divorce, remarry and suffer three miscarriages. She also would meet her greatest teacher, Jason Debusk.<\/p>\n

Jason lived for two-and-a-half years after being told he had terminal Ewing\u2019s sarcoma. His mother, Timmy, calls that a miracle. \u201cHe lived longer than we expected and we made the most of it,\u201d she says.<\/p>\n

The person who helped them do that was the earnest but awkward social worker who got between Jason and Family Feud<\/em> in a hospital lounge 12 years ago.<\/p>\n

Kate Eastman had come to Texas via Boston University, where she met her first husband, a minister, while she pursued a master\u2019s 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\u2019s in social work at the University of Houston.<\/p>\n

Optimistic and spirited, Jason was delighted when Eastman asked him to show how she could support him and his family. \u201cI had been way too serious,\u201d she says. \u201cHe didn\u2019t 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.\u201d<\/p>\n

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. \u201cKatie was there to think clearly for me,\u201d Timmy says. \u201cShe encouraged us to accept the help people wanted to give. When I\u2019d say, \u2018This is more than I can cope with,\u2019 she\u2019d offer ways for me to cope.\u201d<\/p>\n

Eastman became Jason\u2019s 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\u2019s type of cancer needed 10 times the amount of morphine Jason was receiving. \u201cHaving Katie there to help in all these ways made it easier for Jason to live to the fullest the life he had left,\u201d Timmy says.<\/p>\n

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.<\/p>\n

\u201cThey\u2019re doctors,\u201d he said. \u201cThere\u2019s always something<\/em> they can do.\u201d<\/p>\n

\u201cJ,\u201d Eastman said gently, \u201cthere\u2019s nothing more that they can do.\u201d<\/p>\n

Jason rolled over in his bed and cried. It is a moment, as he squarely faced death, that Eastman now calls sacred.<\/p>\n

Timmy Debusk believes God blessed her family with Katie Eastman. \u201cThe 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.\u201d<\/p>\n

Timmy speaks of Jason in the present tense, for she knows he is right behind his friend Katie Eastman and \u201cproud as punch\u201d of the Jason Program. Today, with his help, she is showing the dying how to live.<\/p>\n

Virginia Wright is a free-lance writer who lives in Cumberland, Maine.<\/em><\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

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