By Michelle Boyte
On Good Friday, April 9, 2004, my husband, Cory and I welcomed Lillie into our family of three. Along with sister, Hannah, Lillie was a special blessing with a smile and spirit that could light up a room and touch a world. Little did we know, Lillie would touch the world of children and families dealing with a deadly form of pediatric cancer called neuroblastoma.
From Happiness to Heartbreak in One Day
Like many families, we enjoyed family beach trips. With two little girls, Hannah, 4 and Lillie 2 ½ years old, these were the days parents wish they could freeze in time and hold on to forever. During our family beach trip in October 2006, we began to notice that Lillie wasn’t sleeping well, but she was away from home and out of her routine, so we didn’t think that much of it. But once we returned home, the poor sleep continued and she looked a little pale and seemed tired. Nothing out of the ordinary for a toddler with a virus”. When the symptoms persisted, I took Lillie to PrimeCare, where the physician did blood work. The doctor was alarmed when Lillie’s hemoglobin was 6.5 and her platelets were 22,000. We were immediately sent to Brenner Children’s Hospital Emergency Room. Lillie stayed overnight and had more tests and the next day we were told that Lillie had stage IV cancer with only a 30% chance to live.
The Journey to Save Lillie
When Lillie was diagnosed, she had a tumor on her adrenal gland the size of a softball, areas of disease on her liver and 80% of her bone marrow was diseased. Lillie had most of the aggressive treatment recommended including high dose chemotherapy, radiation and surgery. We took Lillie to some of the best pediatric hospitals including St. Jude in Memphis, Memorial Sloan Kettering in NYC, Duke and of course Brenner Children’s Hospital. After seven months of treatment, Lillie was finally declared NED (no evidence of disease). The next six weeks of remission status was filled with hope and the birth of our third daughter, Eva Hope. In July 2007 Lillie and her dad returned to NY for a follow-up scan, when Lillie became ill and the physicians discovered that the cancer had returned and had spread to her brain. With a 2-week-old, Eva, and Hannah, then 5, I flew to NY to be with Cory and Lillie and determine the status of the disease and the treatment options. After 6 weeks of living in the Ronald McDonald House in NYC and discussing Lillie’s prognosis with doctors all over the country, we realized a cure would not be found for Lillie. She bravely battled ‘the beast’ for 10 months. She was finally cured on August 28, 2007 when she tip-toed into Heaven.
Finding a Way to Go On
After Lillie passed away, I began struggling with the true purpose of her life and of Lillie’s illness. “What were we suppose to learn or do with this heartache? There had to be a reason. Our faith remained strong and we knew God could take this pain and bring something good from it; He works all things for good. Almost a year after Lillie’s passing we began talking about a foundation to help other families dealing with neuroblastoma.
Lillie’s Friends Foundation was founded to provide real hope to families by raising awareness and funding for innovative research that significantly increases cure rates; support is also given to families through the crisis that comes with the child’s diagnosis.
Less than a year after the foundation was formed, Lillie’s Friends wrote it’s first research grant for $75,000. This grant funded cutting edge research in the fight to find a cure for neuroblastoma.
This year on Saturday, March 31, 2012, Lillie’s Friends Foundation is holding its 4th Annual 5K and Family Festival at BB&T Ballpark, home of The Dash. We will presenting another grant of $50,000 to Dr. Sholler for her amazing work in pediatric cancer.
The 5K and Family Festival begins at 9 AM. In the spirit of the event, participants will be given the opportunity to remember someone who has fought cancer. You will have the choice to honor someone special by carrying a real or plastic egg along with you while you run. Runners that choose to participate in this symbolic gesture will write a name on their egg and run the 5K with the egg. We feel that this is just a reminder that when someone is diagnosed with cancer, life becomes much more fragile and simple things become a lot harder to do. We know that when a family is fighting to save a loved one, often times things get messy. This part of the race is completely optional!
Race participants raising over $150 have the option to have their registration fee waived/refunded.
The festival is a ton of fun with games, crafts, face painting, live entertainment, and great raffle prizes including an all expense paid trip to Miami Fl and stay at the Biltmore Resort, a stay at the Great Wolf Lodge in Concord, NC, and much more. The highlight of the festival includes a huge egg “dash” with over 20,000 eggs! Proceeds from the event also help families on a personal level with financial support who are burdened with the expenses of their child’s treatment.
For more information on the event and to register for the race go to www.lilliesfriends.org.