Told she may never walk unaided, now on H.S. crew team
OCEAN CITY — Trish Adkins and her family got involved with the Alex’s Lemonade Stand Foundation 14 years ago when her daughter, Lily, was diagnosed with an ependymoma — a cancerous tumor in her brain.
And 14 years later, Lily, Trish and other members of their family were on the beach in Ocean City helping with an Alex’s Lemonade Stand made of sand. Trish Adkins said they began bringing Lily to America’s Greatest Family Resort almost as soon as she got out of the hospital.
“At 14 months old she was diagnosed with a brain tumor called ependymoma. It’s the third-most-common type of pediatric brain tumor but it’s still incredibly rare. Childhood brain cancer is so rare,” Adkins said. “She was treated at the Children’s Hospital of Philadelphia, where she had surgery. She was in the hospital about a month and then we went to MD Anderson in Houston for proton radiation treatment.” (In 2007, proton radiation wasn’t available in Philadelphia, she explained.)
Lily was there for “most of the summer, had six weeks of proton radiation, and then her official treatment ended and her recovery really began when we came home,” Adkins said.
The Haddon Township family has been coming to Ocean City “forever. This is the beach we always come to,” she said of 12th Street.
They missed most of that summer because of Lily’s treatment, “but ran down for a day just before Labor Day and did everything we could in a day. We have these pictures of her in the ocean. It was her second summer. She was so young.
“It’s fun to look back at that and see the (14th Street Fishing) Pier in the background. This is an important place to us. It’s where we’ve always taken family vacations. It’s where my family took vacations. It’s awesome,” Adkins said.
The road back for Lily has taken work.
She wasn’t yet walking when she was diagnosed. She was still crawling.
“After surgery it really affected her muscle tone and her balance. She couldn’t walk. She had to relearn how to sit up, how to crawl. And then she was in physical therapy,” Adkins said.
“A year after her diagnosis, we saw a rehabilitation doctor who said, ‘yeah, I don’t think she’ll ever walk without crutches or braces or a walker.’ It was so devastating. We thought she survived this and how is this possible? But she dug in and we dug in and my husband, in particular, dug in with taking her on walks all the time.
“We actually used to bring her to the boardwalk with her walker weekday evenings in the fall. We’d bring her down here because she loved it so much. It was good motivation to walk the boards.”
With the support and care, Lily proved that doctor wrong.
“We took her everywhere. At 3 she took her first steps in a mall without a walker and she never used it again. It was amazing. She started dancing when she was about 3½. She did therapeutic horseback riding and she always wanted to be on a crew team. That’s been her dream,” Adkins said. “She’s fought really hard. She still has balance issues and her coordination is a little off. She fights and fights to do these things, which I think is amazing. She doesn’t do it like everyone else, but she doesn’t stop. She’s relentless. She’s the strongest person I know, especially physically now after rowing. She’s amazing.”
Lily, now 16, is a junior at Haddon Township High, where she is on the crew team.
Lily was working the sandcastle lemonade stand Friday with others including Joey Dickerson, the 9-year-old Williamstown boy who had the inspiration to create it, and David Coyle, also of Williamstown, who was the architect and chief engineer.
Adkins said they met Coyle through Alex’s Lemonade Stand Foundation.
When supporters register with the foundation to do an event to raise money, the foundation sends an ambassador, in this case, Lily.
“A friend who works there knows we always come to Ocean City so she was like, ‘you guys should go.’ A lot of times ambassadors are families like ours who volunteer to help out at events. It really brings together the supporters who may not have a personal connection to childhood cancer with families and it makes the community bigger. That’s the thing about Alex’s, it’s all about working together.”
Alex Scott, who held the first lemonade stand in 2000, told her mother she wanted to raise $1 million for pediatric cancer research and, with others joining the cause, did it by the time she died at 8 years old. The foundation has since raised more than $250 million for research.
Adkins was impressed with the sandcastle stand. “They got really creative with all the fake lemon slices and all the jewels and all the decorations. It’s an actual working lemonade stand,” she said, looking on in wonder.
“I do a lot of research writing for Alex’s Lemonade Stand,” Adkins said, noting she works with scientists for much of her work.
“I thought there was this great competition (between them), but in cancer research they all work together. That camaraderie and collaboration is what is getting safer treatments and cures for kids. That’s all fed by Alex’s,” she said.
“No one can cure childhood cancer alone.”
By DAVID NAHAN/Sentinel staff