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‘Piper’s Legacy’ honors young namesake by setting out to ‘crush’ pediatric cancer. Here’s how you can help.

January 23, 2019 GMT

‘Piper’s Legacy’ honors young namesake by setting out to ‘crush’ pediatric cancer. Here’s how you can help.

Piper’s Legacy was founded last year after 6-year-old Piper Samuels of Avon Lake lost her battle with an aggressive bone and soft tissue cancer called Ewing’s Sarcoma. Join Piper’s Legacy on Feb. 16, for Magic Gives Back, a family-friendly night of magic and illusion while supporting the fight against Ewing’s Sarcoma. Buy tickets here, or visit Piper’s Legacy on Facebook.

AVON LAKE, Ohio – On a chilly evening in November 2016, 5-year-old Piper Samuels opened the front door of her Avon Lake home to find hundreds of supporters -- a melancholy gathering of children and adults with candles, bright pink “Team Piper” T-shirts and prayers.

Most children her age would see a crowd like that and hide behind a parent’s pant leg. But instead, Piper darted outside, so excited she forgot to zip her fuchsia coat or to cap her small, bare head, already robbed of most of her blonde hair from chemotherapy. She perched on a rock in the garden for a better look at the gathering and smiled. She was the brightest light on the lawn, with her big brother, Nolan, at her side.

It was a powerful night, though also a terrifying one. Three months earlier, what looked like infected mosquito bites on Piper’s right foot turned out to be an aggressive form of bone cancer called Ewing’s Sarcoma. And many life-changing days and chemo cycles later, Piper was on the eve of surgery to amputate that leg’s malignancy below the knee.

The surgery was one of many excruciating decisions her parents, Kari and Kevin, had to make for the best chance at her survival. And Piper faced it with the same bravery and spunk that she brought to every challenge cancer presented – the many rounds of chemo, radiation, scans, needle pokes and hospital stays. But despite a brief, triumphant moment that winter, when it seemed the cancer had retreated, Ewing’s Sarcoma returned with a vengeance by spring. And Piper lost her battle in August 2017, little more than a year after her diagnosis.

Kari and Kevin Samuels, who had documented Piper’s journey in a series of heartrending Facebook and blog posts, would later say that Piper’s battle was lost before it had even begun.

Only three drugs have been approved in the past 20 years for pediatric cancer, compared to hundreds that have been developed for adults. The National Cancer Institute designates only 4 percent of its cancer research funding for pediatric cancer, and just a sliver of that for Ewing’s Sarcoma research. As a result, many of Piper’s treatment protocols had seen no innovations for decades. Her chemo treatment was developed 30 years ago and carried some of the harshest side effects.

So, the Samuels family turned their grief into action. They formed Piper’s Legacy, an organization devoted to filling in that funding gap, funneling tens of thousands of dollars in donations to promising research in the fight against Ewing’s Sarcoma. Piper’s Legacy partners with the nonprofit 1 Million For Anna Foundation, which shares its mission.

They want to count you among their partners, too. Here’s how you can get involved.

On Feb.16, at the Magnificat Performing Arts Center in Rocky River, Piper’s Legacy will present Magic Gives Back – a Las Vegas-style illusion show headlined by local magician Rick Smith Jr., who has showcased his act on TV shows Shark Tank and America’s Got Talent.

Piper’s Legacy will receive a portion of all ticket proceeds, which in turn will directly fund cancer research. Tickets range from about $22 to $28 and are available through the Piper’s Legacy Facebook page or eventbrite.com. If you miss your opportunity to attend the event, tickets will go on sale in late April for the next Piper’s Legacy fundraiser in early June – an obstacle course for kids ages 6 and up, with other family-friendly activities for all ages. And in the meantime, please consider clicking here to donate to the cause.

So far, Piper’s Legacy has helped fund a team of world-renowned scientists and clinical researchers at the University of Texas Southwestern Medical Center who are focused exclusively on Ewing’s Sarcoma. They’ve developed methods and equipment to image individual Ewing’s cells as they spread through the body – a scientific breakthrough that has provided great insight into the cancer’s behavior and what treatments might stop it in its tracks.

The team also is working to identify molecules that tumor cells need to survive, but are not essential to healthy cells. Finding a way to inhibit those molecules could starve the cancer, while sparing the body’s normal tissues and eliminating many of the horrible effects of traditional treatments.

In a recent interview, Kari Samuels said she originally began chronicling her family’s journey online both for posterity and to raise awareness about this little-known form of pediatric cancer. Today, those blog entries and Facebook posts serve even greater purposes -- as a resource for families facing new diagnoses, a vehicle to raise money through events that Piper would have loved, and as a touchstone for a growing movement of supporters.

“More than anything we want Piper back, and that’s just not possible,” she said. “So, we really want to make a difference. We want to change the landscape for kids and families who have to walk the path that we walked. There must be better treatments. We have to find them.”