Jay Scott, founder of the Alex’s Lemonade Stand Foundation, spoke to students on Sept. 8 about finding purpose in tragedy and the legacy of his extraordinary daughter Alex, who raised more than a million dollars for medical research before she died of cancer at the age of eight. Scott’s lecture was the first in a series of events sponsored by the FYE Common Reading program.
Scott said it was 25 years ago that he first enrolled in college, at the University of Connecticut in 1986, with two goals: to make a difference and to earn enough money to buy his parents a house. He met and married his wife, Liz, and the two started a successful coffee shop near the university. “I never imagined the challenges that would face me, or how one spunky little girl would change my life,” he said.
Alexandra “Alex” Scott was born in January 1996 as the second of Jay and Liz’s four children. Just before her first birthday, she was diagnosed with neuroblastoma, a type of childhood cancer. Alex underwent surgery around her first birthday and was paralyzed from the chest down. Doctors told the Scotts that she would never walk, but soon afterward they noticed she was moving her legs.
The Scotts endured a series of highs and lows throughout Alex’s illness. Two weeks after she was paralyzed, the doctors said she had a good chance for complete recovery. By her second birthday, she was able to stand with a brace. But, when Liz became pregnant with the first of Alex’s younger brothers, doctors discovered a new tumor in Alex and began another round of treatment. By her third birthday, Alex’s tumors were no longer responding to chemotherapy.
The Scotts moved from Connecticut to Philadelphia when Alex’s doctors said that they would be able to provide better treatment for her if she was around more often—the Scotts had been commuting to Philadelphia for experimental treatments.
“Alex was determined and strong,” Scott said. She began a stem cell treatment in Philadelphia that required a month long stay in the hospital. During that period she developed mouth sores as a result of the drugs and she was unable to talk. When she recovered her ability to speak, she told her parents she wanted to start a lemonade stand.
Throughout her illness, Alex had six major surgeries and several more minor ones, a variety of different leg and body braces, over 20 CAT scans and MRIs, 25 traditional radiation treatments, 60 rounds of chemotherapy, 250 nights in the hospital, a treatment that injected radioactive iodine into her veins—she had to remain in a lead room until she was no longer radioactive—over 900 hospital meals, and, in the second grade alone, she missed 150 days of school.
Yet, through it all, she held on to an unrelenting positive attitude. “Our nickname for her was ‘grandma,’” Scott said, because she had her way in the house, and more importantly, because of her wisdom. “I remember one time, I took her to the hospital around 2 a.m. because she had a bloody nose,” Scott said. “I told her, ‘I’m so sorry you have to go through this.’” Alex replied, “I’m thankful for the things I have, I don’t worry about the things I don’t have.”
Alex was just four years old when her parents finally caved and let her hold a lemonade stand. She was so excited that she got dressed the night before and set out her cheerios for breakfast, so she wouldn’t be late the next morning. At first her parents thought that she wanted the lemonade stand to buy herself something, but Alex announced her plans to give the money to the hospital that had been taking care of her. She raised more than $2,000 on her first day.
The lemonade stand became an annual event at the Scott house. One year when Alex was six and had just started kindergarten, her parents made her wait until school started before she could open her stand. She made $800 that day. “That’s a pretty good amount for a lemonade stand, but she was not happy,” Scott said. The weather had turned cold and Alex was determined to raise more.
The next year she held her stand when it was warmer outside, and thanks to buzz generated in a column that ran about Alex in the Philadelphia Inquirer, her stand raised $12,000 on its opening day. One person bought a cup of lemonade for $500. Traffic snarled in the Scott’s suburban neighborhood. Alex continued to hold her stand every summer. She broke the $12,000 record the next year with an $18,000 day. Her story caught on nationally, and people began writing letters to Alex and holding their own lemonade stands to raise money for childhood cancer research. Alex set her sights on raising $1 million, and just after her 8th birthday, after having raised $700,000 throughout the summer, a pledge from Volvo took her over the $1 million mark. She died two weeks later. Her parents think she was holding on to accomplish that last goal.
The Alex’s Lemonade Stand Foundation has raised over $45 million for cancer research since Alex passed away in 2004. One of the research projects it funds found the cause of neuroblastoma, the type of cancer Alex had, and developed new treatments for the disease that can help children stay in remission.
Scott tied his daughter’s story to the book The Immortal Life of Henrietta Lacks, which first-year students read as part of the FYE Common Reading program. “Both Henrietta Lacks and Alex unknowingly made a huge difference in the world,” Scott said. “I would challenge you to knowingly make a difference. It may be a struggle and it may be difficult. But you should always try to make a positive difference.”
Through PhilaU’s annual Day of Service on Tuesday, Sept. 27, students will have the opportunity to volunteer for service projects in the surrounding communities, including staffing Alex’s Lemonade Stands throughout the Philadelphia area. More information about Day of Service, as well as the Alex’s Lemonade Stand service project can be found at an information table in The Kanbar Campus Center from 12:30 to 2:30 p.m. from Tuesday, Sept. 13 to Thursday, Sept. 15, and online at www.PhilaU.edu/DayofService.