Violet’s Story
Violet was the light of our lives, a funny, incredibly bright, fun-loving girl who loved Disney movies, running and playing with her dolls. In November 2021, shortly after her third birthday, she suddenly started mumbling words and struggling with her balance. On November 10, she had an MRI performed at Lurie Children’s Hospital in Chicago, where doctors pulled us into a room and told us the news – our sweet, innocent daughter who hours earlier had been playing peek a boo with a nurse, had a brain tumor called Diffuse Intrinsic Pontine Glioma, or DIPG. Her form of brain cancer had a less than 1% survival rate, and no known effective treatment. As we learned later, the standard of care for her was the same as it was when Neil Armstrong’s daughter was diagnosed in 1962. Within several weeks, she would no longer be able to talk or stand up, and would have to start a modified diet due to difficulty swallowing. When we asked the doctor if this was the worst possible diagnosis our daughter could have, she paused for a moment, considering her words. She softly answered, “Yes.”
Violet immediately began radiation and we explored clinical trials after performing a biopsy on her tumor. Some trials had started to show some encouraging signs, especially those in immunotherapy that reprogram a patient’s T cells to attack tumor cells. We spoke to every leading expert we could identify and narrowed her to a clinical trial that we thought gave her the best chance of success. In early February though, we found that her tumor had metastasized, and any small chance of seeking a miracle cure was gone. We made her as comfortable as possible in hospice at home, managing almost a dozen medications to keep her pain and symptoms minimized, and spent every minute we could with her. We had tea parties, movie watches, played dress up – whatever would put a smile on her face. She stayed awake and with us longer than the doctors suggested was possible. The last day she could move her arms, she used them to touch us under the chin, a gesture we always used to tell her we love her. On February 26, 2022, she succumbed to this horrible disease.
We are establishing the Violet Foundation to do everything we can to advance the treatment options available to families affected by pediatric brain cancer. No child should ever have to go through what Violet did, and yet hundreds do each year. We hope that her legacy is the work that her Foundation will do to end that suffering.