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Piper's fund helps sick children spend last days at home

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    Piper Samuels, shown here in May 2016, died of rare bone cancer in 2017.

    PHOTO PROVIDED

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Piper Samuels’ life was short but her impact will last far longer.

The beautiful tiny blonde was only 5 when she was diagnosed with Ewing’s sarcoma, a rare pediatric bone cancer.

She died in 2017 in her parents’ arms, at the age of 6.

Her hometown of Avon Lake seemed to grieve with her family, with pink ribbons appearing in trees throughout the town after her death.

But her memory will leave an indelible mark for families that face the same road the Samuels family traveled with the creation of an endowment fund in her memory.

The Piper Samuels Pediatric Hospice Endowment Fund recently was started with a substantial donation spearheaded by friends of the Samuels family and colleagues of Piper’s father, Kevin Samuels. Initial gifts from the Cleveland office of the Jones Day law firm, individual partners, lawyers and staff from the Jones Day foundation totaled $400,000, said Racheal Seibert, chief development officer for Hospice of the Western Reserve.

The agency is the only one in the state to provide both pediatric palliative and hospice care at home for patients, Seibert said.

Piper had undergone aggressive treatment to battle her cancer, but in her final weeks she was able to come home and be among her friends and familiar surroundings, which was a great comfort to her family, wrote her mother, Kari Samuels.

She was able to do the things a 6-year-old should: play outside with friends and be with her beloved older brother.

Making sure that other kids have that option is the reason the endowment fund was created, said Will Herzberger, a partner at Jones Day, a board member of the hospice agency and a longtime friend of the Samuels family.

“It was a tragic set of circumstances when Piper was diagnosed and she fought bravely with her disease. But the time came when she just wanted to go home. That was important for her, important for her family,” Herzberger said.

Most insurance companies do not pay for pediatric hospice care, said Michele Seyranian, chief marketing and business development officer at Hospice of the Western Reserve, adding that the agency covers about $200,000 annually in unreimbursed expenses.

“This endowment will help us to ensure that we are able to continue this kind of care. It is so important and we are so grateful,” she said.

Seyranian’s daughter is an adult survivor of cancer who was first diagnosed when she was 4. The pediatric hospice program did not yet exist and was founded by a nurse practitioner who was at Rainbow Babies and Children’s Hospital when her daughter was there undergoing treatment, she said.

“I saw far too many children die at the hospital. When I think of that experience for those families and siblings, I just know they would have used this,” she said.

About 2 percent of the agency’s hospice care is for pediatric patients, with 120 seriously ill children served last year, Seibert said.

“We all know the end of life is part of life, but when it’s a child it’s a different matter,” Herzberger said. “Part of this that is so important is to help the family come to grips with what is going on. The services provided continue on after the passing of the child. The circumstances involved with the passing of a child are much different and significant to those left behind.”

The program provides counseling for two years after the death of a child, which is much longer than adult hospice programs.

Pediatric palliative care helps improve the quality of life for a seriously ill child by informing parents of treatment options and addressing the full range of a family’s needs, including psychological and emotional needs.

Care providers are trained specifically to deal with children, who can have much different needs from adult needs. Seibert said the agency also provides summer camps for children who’ve lost a sibling or family member, so they can still receive counseling while being a kid, too.

For more information or to donate, visit hospicewr.org/piper.

Donors may contact Seibert at (216) 383-3726 or rseibert@hospicewr.org.

Contact Rini Jeffers at rinijeffers@gmail.com or (440) 329-7155.
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