Childhood Cancer Heroes

You are here

Lainie Afendoulis

  • Ewing Sarcoma

Click the images to see them larger above!

Learn more about
Ewing Sarcoma

Get the facts about Ewing Sarcoma and how our research projects are making a difference.

Learn More »

The oldest of three girls, Lainie fit perfectly into the role of eldest sister. Her younger sisters confided in her, asked her for advice and trusted her to give them the right answers to their questions. She was helpful to her parents and was insightful, discerning, sensitive and empathetic to those around her.
Lainie was 9 years old when she first felt pain in her shin, which seemed likely due to soccer or growing pains. Eventually the pain became stronger until it woke her up at night. Lainie’s x-rays were normal, but a nuclear bone scan and follow up x-ray revealed Ewing’s Sarcoma. “Life,” her father wrote, “would never be the same.”
“Keeping it normal” was the motto the family adopted, and they tried to the extent that they could to retain whatever normalcy and ordinary life was possible in the midst of Lainie’s cancer treatment. Throughout their cancer journey, they resisted letting Lainie or their family be defined only in terms of Lainie’s illness.
Lainie started a clinical trial that lasted 10 months and was treated with chemotherapy and limb-salvage surgery to remove the tumor from her tibia and replace it with a prosthetic device.  All went well initially, and she finished her treatments free of cancer.
Five months later, her family was devastated to learn that Lainie’s cancer had returned. They pursued alternative therapies for a time but eventually made the decision to concentrate instead on making the most of the time their daughter had left. They were able to live life to the fullest during this time and Lainie faced her struggle with grace, courage and compassion. Lainie died peacefully at home on June 14, 2000.
To honor Lainie’s memory, her Dad started Lainie’s Angels, a foundation that provides peer support and parent advocacy to parents of children with cancer and blood disorders.  He wrote, “My dreams for Lainie's future now lie in the success and continued growth of her foundation and the work we do.”
Quote from Hero: "My hope is to be normal. But I think that the first step to having a normal life with cancer is accepting the fact that life is not normal.  Thinking positive, being grateful for every day and living life to the fullest; that's how I keep it normal."  -Lainie Afendoulis

Information submitted by Stathi Afendoulis, Lainie’s Dad
May 2013


Next Hero

Donate in Honor of Lainie Today!

Your donation helps to fund critically-needed research to find better treatments and cures for children with cancer.

Childhood Cancer Heroes

More Heroes

Despite never knowing Alex Scott, Caroline has traveled a similar path. Today, she loves selling lemonade to help other kids with cancer like her. After a family vacation, Caroline was diagnosed with acute lymphoblastic leukemia and began her fight.
Gabby loves animals, taking photos and making jewelry. Being stubborn and feisty, she wasn't going to let an osteosarcoma diagnosis get in the way of her dreams. During her fight, she has had her knee and part of her femur replaced with titanium.