Lily was diagnosed with stage 4 high risk neuroblastoma at the age of 5 in August 2013. Instead of starting kindergarten, she started a 15 month treatment course to include chemotherapy, tumor resection surgery, stem cell replacement therapy, and immunotherapy at American Family Children's Hospital in Madison. Countless planned and unplanned visits were made to Madison, having our bags packed was a necessity, along with remaining flexible to change and having a backup plan. Lily wasn’t able to attend school and daycare due to her increased risk for infection but the New London school system allotted a tutor to come to our home and Lily was able to attend school in the hospital when she felt well enough. The hospital was a home-away-from-home and we found the benefits of this child-centered place including the selfless volunteers to play games with, pet therapy dog visits, squirt painting, and dessert for dinner along with all the cuddles and snuggle time we could fit in! Lily didn’t always want to go to the hospital but was always able to see the positives along with the necessity of treatment. She showed courage and strength during this time that made me proud as a mother and made me appreciate the child’s perspective of life. We lived life the best we could, separated from family and friends, separated from her brother. 

Lily was able to start 1st grade in the fall of 2014 as her treatment wrapped up and we received the blessed news of “no evidence of disease” in November of that year!! Lily beat cancer! We celebrated the holidays at home with family, Lily enjoyed school with her friends, life was closer to how it should be. Lily was granted a Make-A-Wish trip to Disney in April of 2015 with her brother for a once in a lifetime opportunity to have the red carpet rolled out and enjoy time together with all the fun and treats a kid could imagine. It was truly a wonderful time!! Unfortunately this time was cut short at our 6 month check up at the end of May 2015. Testing showed that the cancer had returned and we would need to come up with an “off course” of treatment. While the doctors formulated their plan, Lily was allowed to finish 1st grade and enjoy a few days with family before starting more trips to the hospital and more IV lines (Lily loved to swim and central lines/PICC lines didn’t allow for this childhood pleasure.) Just a couple days before our planned treatment course was to start, Lily’s pain spiked and we headed to the hospital emergently. The cancer had spread surprisingly fast and Lily was admitted to start treatment now. But we were too late, the cancer took over her small body and she gained her heavenly wings on June 13th, 2015. The most difficult day of my life was the day Lily left this world and I had to leave the hospital without her with me. 

Over 9 years have passed and not a day goes by that she isn’t thought of. She has positively impacted so many by her strength, courage, love, and kindness. The death of a child allows us to reflect and realize how short and precious life truly is. Her life inspires others to enjoy, laugh, love, and fully live in the moment while maintaining hope for the future. Snowdrop has played a part in our journey since shortly after diagnosis to the present day: honoring her in their 5k, Christmas presents to get us through our first holidays, and inspiring me to pick up this running habit to cope and further honor my girl along with the lifelong friendships formed…priceless. 

Hope, courage, love: everything that Snowdrop is and does for these children, families, and the community. Thank you to everyone that has been part of our journey from the early days of diagnosis to countless years of running on treadmills, butterflies, crazy ultras, and keeping my Lily’s memory alive. You all carry on the beautiful vision and mission of The Snowdrop Foundation. 

Big hugs and love, Melissa (Lily’s mom)