Information Resource Rooms
Program encourages patients to bond (with kids) over books
Celebrating at Dana-Farber were Halle (L)
and Joseph Wagner, and oncologist Ann
Partridge
Even when at her sickest from aggressive breast cancer treatment at Dana-Farber, Joelle Pauporte always found time to read with her young daughter, Halle. Now, thanks to her vision, many others are experiencing the same pleasure.
Dana-Farber has established a partnership with the Light One Little Candle Foundation, which Pauporte started while in the late stages of her treatment. Through this effort, new children's books are available free of charge to any adult cancer patient at Dana-Farber/Brigham and Women's Cancer Center who would enjoy connecting with a child (age 13 or under) through reading.
Launched in the spring of 2005 — just six months before Pauporte's death at 36 — the foundation gets its name from a lullaby she sang to her toddler daughter each night. "It is better to light just one little candle than to stumble in the dark" this song began, and as the disease wore her down, Pauporte was determined to create bright memories for young Halle. A psychiatrist who understood the impact cancer could have on families, she focused her time on Dr. Seuss as well as doctor visits. Establishing the foundation was her way to help other patients do the same.
"Going through something as difficult as cancer, you can overlook simple things like just being together, reading," Ann Partridge, MD, MPH, Pauporte's primary oncologist, said during a Dec. 11 ceremony at Dana-Farber launching the DF/BWCC initiative. "When I talk to patients about the program, they always ask me, 'Are the books about cancer?' I say 'No, just about anything else.' That's the idea."
Not just for parents
A quick glance at some of the titles available in the Eleanor and Maxwell Blum Patient and Family Resource Center makes this point clear. Shelved in the center's Dana lobby offices near myriad volumes on coping with cancer, the several hundred donated books include a treasure trove of children's classics in English and Spanish, such as "Make Way for Ducklings," "Heidi," and "Where the Wild Things Are." Each book comes to the Blum Center through Dana-Farber's Family Connections Program, which partners with Light One Little Candle as part of its mission to help adult cancer patients who are parents and their children. Each also has a bookmark describing the foundation's mission, as well as a sticker on the inside cover on which patients can log memories for their family, another practice in which Pauporte engaged feverishly during her treatment.
"Patients who come in and see the books are overwhelmed by the thought that somebody is not only thinking about them, but about their kids, too," says Judy Balboni, RN, a nurse in the Blum Center Resource Room. "The fact the books are not about cancer makes it almost like a moment of escape." Blum Center volunteer Cathy Glavin is quick to add, "This isn't just for parents. We've had plenty of grandparents, uncles and aunts, and friends pick out books."
Appropriately, the Dana-Farber launch
included a book reading for young
attendees
Dana-Farber is the seventh hospital nationally to join in the Light One Little Candle effort, including institutions in Pauporte's native New York, Connecticut, and California. During the last summer of her life, Pauporte met with Dana-Farber staff about its inclusion, and after she died, her close friend Amy Kane became a volunteer here to help with the launch. Books are now coming in regularly to Program Coordinator Daisy Gómez of Care Coordination, who says similar efforts are being planned for oncology patients at Brigham and Women's and Faulkner hospitals.
Kane and Gómez were on hand with a few dozen staff and patient families for the Dec. 11, 2006, dedication ceremony, along with 5-year-old Halle and Pauporte's husband Joseph Wagner, MD, who also helped develop the foundation and serves as its chairman. The event in the Shields Warren lobby included — appropriately — a book reading for patients and family members by "Marian the Librarian," as well as a magic show by Dana-Farber staffer Chris Hugenberger. As Halle and the other children on hand laughed with delight, Wagner reflected on what it all meant.
"I still sing 'One Little Candle' to Halle every night," he said. "I tell her to be brave, have courage, and always believe, just like Joelle used to tell her. Then whenever she wants to share a memory about mommy, we do that too. It's all about spending time together and making memories, which of course is the idea behind the whole program.
"It started out as something she could latch onto to stay 'normal' during treatment, but it's grown into so much more."
To make a book donation to Dana-Farber, contact Daisy Gómez at 617-632-4235, or go to www.lightonelittlecandle.org and click on "donate" and "Boston."
– Saul Wisnia
Saul_Wisnia@dfci.harvard.edu
