Lending Hearts aims to ease isolation of young cancer patients
Cancer patient Cadence Charmello, 6, of Kittanning shows her Halloween cutout at Children's Hospital of Pittsburgh of UPMC. With her are child life specialists Michael Shulock and Katie Fole. Mr. Shulock is on the board of Lending Hearts.
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When Carly Repcheck was home-schooled last year while she received chemotherapy for an unusual type of lymphoma in children, she rarely saw her friends.
Asked if she was lonely, 15-year-old Carly said, "A little bit, but I had the dogs, so it was OK."
It's an answer that can break a parent's heart.
"When you're not with your friends, it's out of sight, out of mind," said her mother, Carma Repcheck of Mt. Lebanon. "It wasn't that her friends didn't care. It's just they weren't seeing her, so they were not thinking to call or stop by."
A new Pittsburgh-area nonprofit founded by Vasso Paliouras aims to ease the loneliness that many child and teenage cancer patients endure.
Beginning next year, Lending Hearts will provide activities for patients ages 8 to 18 and their families, whether they are actively battling cancer or in remission, said Ms. Paliouras of Mt. Lebanon, whose younger sister had cancer as a teen and is now grown and in remission.
The group, of which she is president, is spreading the news through word of mouth and brochures.
"There's going to be things all the time," she said. The organization is exploring offering free activities in the arts health and wellness, exercise, nutrition, performing visual arts, or world cultures.
"As you're going through chemo, life doesn't need to stop," said Ms. Repcheck, a Lending Hearts board member. "Children and adults have to be aware of that. ... It's very isolating and has a bad stigma, [but] not everyone dies from cancer. We need to learn how to live better with it."
Lending Hearts, she added, also can be a source of needed information. "I think the medical system, your doctors, caretakers, nurses, they assume you know everything, where to go and where to get information that you need while you're going through chemo, and I found it difficult to find," she said. "If you had someplace to go where you could go to learn what to expect it would be helpful."
Children's Hospital of Pittsburgh of UPMC is acting as an adviser to the nonprofit, and Children's child life specialist Michael Shulock is a member of the board.
"The concept is clearly an excellent one for patients," said Kim Ritchey, chief of Children's hematology/oncology division. "The reason is when a child has a cancer, it impacts their life on an ongoing basis as well as their family. Sometimes it involves their life so much you kind of lose sight these are just normal kids. ...
"This is a way to give them an outlet, let them be normal kids, have some fun and have some neat experiences besides."
Ms. Paliouras said she thought of the concept for Lending Hearts in February 2004, when her sister, Constance Zotis, then 17, was diagnosed with Hodgkin's lymphoma. The entire family accompanied her to chemo treatments, and in a page on Lending Hearts' website she said she had the support of her closest friends as she tried to maintain all her regular activities.
Still, Ms. Paliouras said, "I soon found out my sister was in the minority of receiving so much peer support. ... That's what we want to overcome."
Over the years, she thought about what she'd observed, but "outside of my husband and my parents, I never spoke a word of [her idea for Lending Hearts] to anybody until January of this year."
When she did, "it kind of took off like wildfire."
The first board meeting was in June, the same month in which the IRS granted nonprofit status.
Besides Ms. Paliouras, there are three more officers and 15 others on the board, including representatives of banking, theater, television, insurance, architecture, real estate and education. In addition to being the mother of a cancer patient, Ms. Repcheck is an assistant professor of health and physical activity at the University of Pittsburgh.
There also are 10 advisory board members, including John Bettis, brother of former Steelers great Jerome Bettis and a restaurateur.
The goals, Ms. Paliouras said, are to provide a "supportive and engaging atmosphere for children and teens with cancers and those in remission ... [in which] to feel a sense of normalcy among their peers. ...
"That's where we want to lend our hearts."
Pohla Smith: email@example.com or 412-263-1228.
Correction/Clarification: (Published November 18, 2011) Vasso Paliouras of Mt. Lebanon founded Lending Hearts, a new nonprofit aimed at easing the loneliness that many child and teenage cancer patients face. Her first name was incorrect in a story Monday.
First Published November 14, 2011 12:00 am