2020 Honored Angel: AliviaA brave little girl. A wonderful daughter. A beautiful soul.
For parents Amy and Ian, the birth of their daughter, Alivia, in September of 2012 represented an initial step in their planned, wonderful life together. That all changed when Alivia was diagnosed with Ovarian Sarcoma on November 29, 2017, at the tender age of 5. At diagnosis, it was discovered that Alivia was born with a mutated DICER1 gene, putting her at a higher risk for certain types of cancer. Her diagnosis came with such a poor prognosis that her oncologist refused to give them survival percentages. With uncharacteristic resolve and the loving support of her parents, Alivia endured multiple surgeries and nearly a dozen different high-dose chemotherapies over two years. Sadly, Alivia passed away from her disease. |
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But cancer and treatments will never define Alivia. She was independent, creative, strong and, above all, fun.
She loved arts, crafts, and the performing arts. She could convince anyone to dance with her including nurses, strangers, and even her shy uncles.
She loved to play doctor. Alivia spent hours at home setting up her “exam rooms.” Once, she even used a toothpick to draw blood on her grandma.
“She was not very happy with me that real blood draws were forever forbidden,” recalls Amy.
Alivia also loved dogs, especially her beloved Coco.
“When people asked her if she had any brothers or sisters, she always said she had a brother, referring to Coco. Even her final words were to tell us with a smile that she was dreaming about her Coco.”
The family has nothing but love and admiration for the medical professionals who worked so hard to save Alivia’s life.
She loved arts, crafts, and the performing arts. She could convince anyone to dance with her including nurses, strangers, and even her shy uncles.
She loved to play doctor. Alivia spent hours at home setting up her “exam rooms.” Once, she even used a toothpick to draw blood on her grandma.
“She was not very happy with me that real blood draws were forever forbidden,” recalls Amy.
Alivia also loved dogs, especially her beloved Coco.
“When people asked her if she had any brothers or sisters, she always said she had a brother, referring to Coco. Even her final words were to tell us with a smile that she was dreaming about her Coco.”
The family has nothing but love and admiration for the medical professionals who worked so hard to save Alivia’s life.
“Her healthcare teams became our family,” continued Amy. “It was as if each person on her team was handpicked for her and sent at the exact right time. Alivia was not afraid to voice her opinion or resistance. Instead of being met with resistance, she was met with love, understanding, and respect.”
Her nurses were also there for her end of life care. The end snuck up on us. We had three new nurses and they were all amazing. Mindy, the night nurse, was literally an angel sent from heaven. Even though Liv died, Mindy saved us. She provided peace, validation, reassurance, and love.”
Ian added, “Alivia’s cancer diagnosis completely changed our life. We scoured the earth looking for the best treatment plan. There was a point that we realized that her outcome would almost inevitably end the same no matter what we did. At that point we really decided to focus on her quality of life and appreciate every day we had with her.”
Alivia was part of the DICER1 registry, and her blood and tumor tissue samples were collected to help uncover more information about potential DICER1 therapies.
The military family lived in St. Croix (USVI), Michigan, Arkansas and California after Alivia was born. But Alivia was a proud, self-proclaimed “California Girl.” She certainly embodied that carefree, beautiful image even while staring down cancer. We honor her memory by remembering her in that way and thank her in advance for helping to unlock effective treatments for others.
Ian added, “Alivia’s cancer diagnosis completely changed our life. We scoured the earth looking for the best treatment plan. There was a point that we realized that her outcome would almost inevitably end the same no matter what we did. At that point we really decided to focus on her quality of life and appreciate every day we had with her.”
Alivia was part of the DICER1 registry, and her blood and tumor tissue samples were collected to help uncover more information about potential DICER1 therapies.
The military family lived in St. Croix (USVI), Michigan, Arkansas and California after Alivia was born. But Alivia was a proud, self-proclaimed “California Girl.” She certainly embodied that carefree, beautiful image even while staring down cancer. We honor her memory by remembering her in that way and thank her in advance for helping to unlock effective treatments for others.