On May 30, 2018 Evie was diagnosed with Acute Myeloid Leukemia. She was treated at CHLA for five months. We learned very quickly how challenging childhood cancer is on families.

Upon diagnosis and admission to CHLA, Evie required round the clock blood and platelet transfusions in order to prepare her body for the start of treatment. Childhood cancer is different from other cancers because children cannot leave the hospital while they are receiving chemotherapy. We arrived on May 30^th and Evie didn’t go home until July 1. It was a very long and painful 30 days. We were very lucky to be supported by a large community in Los Angeles who was willing to come to CHLA to donate blood and platelets for Evie. We learned firsthand how important it is for patients that the blood center is fully stocked.

On September 13, 2018 Evie received her bone marrow transplant thanks to an anonymous donor. For an outgoing girl like Evie, the bone marrow unit was a very hard place to live. Once she was admitted into the unit, she was not allowed to leave because of the fear of germs and infection. The chemotherapy destroys a patient’s immune system in order to be replaced by someone else’s. We found ourselves stuck on a horseshoe shaped unit and a room that’s just way too small. She hated feeling trapped, the isolation and loneliness. She also hated that she couldn’t just go to the cafeteria for a snack, and she loved snacks. Sadly, BMT means hospital food and she really hated that. Our time on the bone marrow unit was very hard, we witnessed our bright, beautiful, vibrant girl slowly disappear as her body got sicker and she retreated further into her own mind. Evie’s body gave up the fight against AML on October 30, 2018, just five months after her diagnosis.

In the days and weeks following our loss, we realized so many people followed our story and wanted to do something to honor Evie’s beautiful spirit. Our friends set up our first ever annual book drive because Evie loved books, she was always reading and she benefitted from the Literally Healing Program at CHLA. That first book drive we delievered 1000 books to CHLA and since then we’ve continued to collect and donate books- to date we’ve donated, with your support, over 4000 books.

We plan to continue book drives, blood and bone marrow registry drives and our big goal is “Evie’s Bites” a room on the bone marrow unit stocked with snacks and beverages for BMT patients and their caregivers. Evie would have welcomed the chance to pick out her own snacks, so the room will be filled with healthy snacks as well as not so healthy snacks and everything will be free to patients and their caregivers.

Our focus as a foundation is keeping Evie’s spirit and Light bright. What would Evie do?

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By The Evelyn Swierczynski Foundation

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