Updated: Sep 24, 2021
By her mother, Emily Settle
Two weeks after Lucy’s 4th birthday in November 2019, she was diagnosed with a glial tumor intertwined in her upper spinal cord. She had emergency surgery on Friday, December 6, that resected about 50% of the tumor. From January to February 2020, Lucy underwent six weeks of proton radiation. The world shut down from COVID-19 a few weeks later. On March 30, 2020, Lucy had a grand mal seizure, which led to a CT scan that revealed tumors had spread into her brain and down her spine. She came home on hospice care on April 2 and went to heaven on May 13, 2020. A short five-and-a-half-month journey.
We have come to learn that this happens more often than we realized at the time, but one of the hardest parts of Lucy’s journey was that after those six weeks of very aggressive radiation treatment, the spinal cord tumor completely died off—as in “no evidence of disease.” However, three weeks later, we were learning from that CT scan that the cancer had metastasized to the brain and down the lower part of her spinal cord. The whiplash from “no evidence of disease” to “there is nothing we can do for Lucy” in three short weeks was incredibly hard for our family to process.
Another difficult aspect of Lucy’s journey was that we never had clear answers on the stage or aggressiveness of her diagnosis. It was a roller coaster of ups and downs as information came in from her doctors. The pathology from the tumor tissue didn’t reveal any high-grade features, but it was clearly high-grade from the presentation.
I’m sure anyone who has lost a child to cancer can relate to the questions that we’ll never have answers to:
“Did I do something wrong?”
“Was there more we could have done?”
Despite it all, we still have hope. For us, hope is a person: Jesus. We were able to have hope no matter the circumstances, because we believed that a good, loving God was walking with us. God gave us peace that surpassed understanding in our medical decisions, and He comforted our hearts on the worst of days. We found hope and comfort in our journey, knowing that Lucy would be healed, whole, and cancer-free—if not here and now, which was our prayer, then ultimately in heaven. These truths didn’t take away the pain and the confusion in the process, but they continue to give us hope for the future.
For families on a similar journey as ours, we encourage you to focus on the quality of each day with your child. We learned that we can’t control the quantity of days we have left, but we can control the quality of days, and we chose to find joy and laugh (despite the tears) each day with Lucy and our other girls. Seek out others who have walked through child loss. We found that our best friends and closest family couldn’t relate to what we were walking through, but the Lord provided other people in our life who had lost children, and it was comforting to know that we weren’t alone. We could ask them questions and share our heart about our journey that only they could help us process.
Lucy’s short life was full of fun, adventure, and so much love. Being the fourth Settle sister, she never knew a dull moment. Our favorite memories of Lucy will always be from the summer of 2019 when she was so full of life and personality. We will always remember her running carelessly down the sandy beach as her crazy, curly brown hair blew behind her—arms spread wide like an eagle, and her little body boogie-boarding on top of the Atlantic coast waves. We treasure our lake adventures and the memories of Lucy playing in the water, jet-skiing with her daddy, and helping to drive the boat. Lucy loved playing outside, collecting worms and critters with her sisters, playing with neighborhood friends, going to pre-school, and riding her little pink balance bike.
Her smile was bright, and her dark blue eyes sparkled, melting the hearts of those around her. Her face was always full of expression, often times, silly. She loved singing along to music, reading stories, cuddling with momma, coloring, and eating tacos.
Lucy never once questioned her sickness. She never doubted that she was loved by a loving God. Lucy had a child-like faith that “Jesus is healing me,” and her journey was beautiful, strong, and courageous. Lucy’s life has impacted our faith in Jesus in a powerful way, and she taught us that each day on this earth is a gift.
The Settle Family will be joining us on our annual Sunrise Retreat this month, a bereavement experience offering rest, restoration, hope, and joy for families who have lost a child to cancer. In looking ahead to their retreat, Lucy’s mother, Emily, shares their hopes for this time: “We hope that Sunrise Retreat will be a time to slow down and reflect on what our family has walked through. Lucy died 15 months ago... Sometimes it feels like just yesterday, and sometimes it feels like 10 years ago. We hope that Sunrise Retreat will provide a space to be still, to journal, to process, to talk with other families who understand, and to take another step forward in healing. The beach is such a healing and peaceful place for our family. We also hope that Sunrise Retreat will be a time for our other girls (ages 9, 9, and 8) to have fun, laugh, play, and be kids—an opportunity for our family to make new memories together. A time to unplug, clear the calendar, and forget the day-to-day responsibilities of making meals, cleaning, carpool lines, etc.” Learn more about our Sunrise Retreat here.
During the month of September, we will be sharing stories written by some of the families who will be attending our Sunrise Retreat this month. We hope you will join us in praying for these families who have endured unimaginable loss, that God will use the week away with their family and Lighthouse volunteers to bring healing and hope.
Our fundraising goal for Childhood Cancer Awareness Month is $30,000, because that’s what it takes to put on a Sunrise Retreat. From meals and gifts to Parent’s Night Out, sibling activities and nights of remembrance, every single dollar we receive in September is going to be invested into providing a restorative experience for families who have lost their child to cancer. When it comes to our growing Sunrise Retreat program, more funding means more families served. Whether you can give $1, $100 or $1,000, please join us in honoring the memories of the children we’ve lost by providing support for the families who will never forget them. Visit this page to learn more or donate.