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  • Grateful for guidance from pediatric resource specialists: the Haynes family's story

    Eileen Haynes and her son MichaelEileen Haynes and her son Michael 

    Eileen Haynes, a security screener at Manchester Airport in New Hampshire, has kept travelers safe for 13 years, the same way she carefully watched over her five children as a single mom. But no amount of vigilance could protect her youngest child, Michael, from the abnormal white blood cells that signal acute myelogeneous leukemia (AML).

    Haynes says she has been "out of work" since Michael's diagnosis last spring, but the truth is, she has a new job: full-time caregiver and advocate for Michael, 17, a high-school basketball and football player who has been hospitalized for four months while receiving intensive chemotherapy and a stem cell transplant.

    On April 11, when Haynes learned AML was lurking behind Michael's sore throat, she joined many others who must add financial struggle to the shock and worry of having a child with cancer. That's where Pediatric Resource Specialists Joe Chabot and Stacey Gulick come in, working through the Division of Pediatric Psychosocial Services to help families of young patients in the Jimmy Fund Clinic and Boston Children's Hospital find resources to carry them through hard times.

    A child's cancer diagnosis often has grave monetary consequences for a family, says Chabot. "Typically, when a child has cancer, one parent stops working, so the family is hit financially right away. And the concerns are much greater when there is only one parent." Many young cancer patients receive treatment for two years or more, he explains, and because a diagnosis such as leukemia is often sudden - requiring an immediate, lengthy hospitalization - the family is thrown into crisis right away.

    "Sometimes, basic needs have to be addressed before a family can focus on medical or psychosocial concerns," says Nancy Frumer Styron, PsyD, director of Pediatric Psychosocial Services. "A child might need five days of radiation, and the family does not have a car." She points out that many families are overwhelmed by sheer logistics: Who will stay with their sick child? Who will care for their other children? How can one or two parents continue to work and keep their health insurance?

    "We are unusual," Frumer Styron adds, "in having the luxury and gift of resource specialists who can concentrate on these concrete needs, work as part of our multidisciplinary team, and allow colleagues to focus on broader psychosocial concerns." Such resource specialists work with adult patients, as well.

    Stacey Gulick and Joe Chabot, pediatric resource specialists at Dana-FarberStacey Gulick and Joe Chabot, pediatric resource specialists at Dana-Farber 

    'We're here for you'

    Chabot and Gulick's efforts on behalf of about 350 families a year can be as simple as offering them gift cards to pay for lunch, or as complex as guiding them through the application process for health insurance or Supplemental Social Security.

    They write letters to banks and utility companies, explaining a family's inability to pay a bill; connect families with resources outside Dana-Farber and Children's, such as federal and community programs and private agencies; and administer the Pediatric Patient Assistance Fund, which uses donated funds to help cover food and transportation expenses.

    "We simply could not do without the support of the Pamela Gefteas Memorial Fund at Dana-Farber," says Chabot. "This fund has supported us for many years, helping to pay for staffing, gift cards for our families, and more. Our goal is to make it easier for a family to concentrate on caring for their child."

    This is exactly what Eileen Haynes is doing, as she stays by Michael's side at Children's while he recovers from a stem cell transplant that will minimize the chances of his leukemia coming back. His sister Sharon, 19, donated her cells for this procedure, which will give her brother healthy new bone marrow.

    "It makes a huge difference if I'm here," says Haynes. "I do the mom things such as holding the nausea bucket or helping Michael into the bathroom, so the nurses can do the medical things."

    Haynes is being paid half of her salary, the other half coming from vacation time donated by her colleagues. The income reduction makes it nearly impossible for her to pay the rent. After she received an eviction notice and a $160 fine because her rent was 10 days late, her community started a fund that covered one month's payment. Chabot and Gulick helped her obtain a grant for another month. Next, Haynes's older children have moved back home so they can funnel their own housing money to their mother.

    In partnership with Childhood Cancer Lifeline of New Hampshire, Chabot and Gulick helped Haynes receive gift cards for meals and gasoline, and additional financial assistance toward her rent. Early on, Chabot explained how to get around the area.

    "I'm not familiar with Boston," Haynes says. "I didn't know where I was, and I don't like to bother the nurses with those questions. I was scared to death when I came here, until Joe arrived out of nowhere and said, 'Stacey and I are here for you.'"

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