Khamon was nine years old when he was diagnosed with diffuse intrinsic pontine glioma (DIPG), an aggressive childhood cancer that forms in the brainstem. Smart, kind, respectful, helpful, responsible, and dedicated, he had been born and raised in Cambodia before moving to the United States in early May 2023.
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In early 2023, Allie started noticing some weakness in her left arm. We thought she had probably pulled something or strained a muscle. After some time passed and the weakness wasn’t improving—and even seemed to be getting worse—we took her to see an orthopedic surgeon.
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Aimee was 11 years old when she was diagnosed with brain cancer. She had two brain surgeries, a shunt placement, different treatments of chemo, 30 radiation treatments, and an immunotherapy trial. After a year of all these treatments, our family was told that there was nothing else that could be done.
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Jaxson Matteo was diagnosed with DIPG just three short weeks after his 7th birthday, on March 16, 2024. As with so many of your journeys, this came out of left field—he was a healthy boy who had just completed his third season of wrestling days before. Unfortunately, Jaxson won his battle on October 10, 2024. His journey was brief—six months and three weeks to be exact—but it was filled with courage and the true definition of a warrior.
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Liliana was diagnosed in April 2021 with Diffuse Intrinsic Pontine Glioma (DIPG) at the age of 2 ½ and passed away on June 17, 2023.
She endured photon radiation under sedation five days a week for six weeks, took steroids that caused significant bloating and weight gain, and began taking a phase 1 clinical trial medication.
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Layla Elizabeth So was a bright and compassionate young woman who touched many lives during her fifteen years. Born on April 8, 2009, in Pearl River, NY to her loving parents, Rizlene (Lisa) and Solomon So, Layla displayed an artistic spark and a keen intellect from an early age. Those closest to her recall her wisdom beyond her years, her gentle kindness, and her creative spirit.
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Nova loved singing and dancing. It was a part of her daily life. She also loved sharing random animal facts with anyone who would listen. Her distinct giggle and smile were infectious. The beach was her happy place. She was the kind of girl you would want as a friend. She loved having fun, showed great compassion for people and animals, and always made the right choice.
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Kaycee Rose Clark was born on March 3, 2014, after a prayerful time of asking God to bring her into our lives. She was the most perfect baby—she ate, slept, and was joyful. As soon as she began to talk, she would speak about God’s love for her. She thrived in everything she did and was active in the church her entire life, participating in Bible quizzing, plays, Sunday school, VBS, summer camp, and concerts. She loved life and lived it to the fullest.
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Cheyenne Grace Nowland was born on March 15, 2024. She was the most precious baby girl, loved and adored by her parents, grandparents, aunts, uncles, and cousins. Cheyenne enjoyed going to church on Sunday mornings and Wednesday nights with her parents and especially loved spending time in the church nursery with her new friends.
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Keanu, affectionately known as Kiki, will always be a radiant presence in our family. Kiki’s beautiful, infectious smile and giggles brought joy to everyone he encountered, including his dedicated medical team at NewYork-Presbyterian/Weill Cornell Medicine.
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The first time Maksim was diagnosed was in 2015. He was almost 6. We had just started kindergarten—and it had only been half a year since we began a new life in the U.S. The diagnosis was medulloblastoma. Surgery, radiation, chemo. It was hard, but he did it!
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