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Lainie Afendoulis

  • Ewing Sarcoma

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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

Website: http://lainiesangels.org
 
Information submitted by Stathi Afendoulis, Lainie’s Dad
May 2013

 

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