Birthday Blast in Memory of Lillie Boyte

Lillie’s Friends Foundation Plans To Increase Awareness of Neuroblastoma Through Birthday Blast in Memory of Lillie Boyte

Children’s Museum of Winston Salem
Saturday April 11, 2009
10 a.m.-2 p.m.

WINSTON-SALEM, NC – Experiencing the terminal illness of a loved one is a very difficult challenge, but when it's your child it is unfathomable. It became reality for Cory and Michelle Boyte, who lost their middle daughter Lillie, 3, to neuroblastoma, an extremely aggressive childhood cancer, less than two years ago.

"We will never forget Lillie because she was such a huge part of our lives," said Michelle Boyte, "but we also cannot forget the hundreds of children who are diagnosed with this disease every year. Our focus since we lost Lillie is to reach and teach as many people as possible about neuroblastoma. We want to broaden the awareness of this childhood cancer and to help increase funding to find a cure for it."

Neuroblastoma is a rare cancer of the sympathetic nervous system - a nerve network that carries messages from the brain throughout the body. Each year there are about 700 new cases in the United States. It is usually found in young children under the age of five, though it may rarely occur in older children and adults. These solid tumors - which take the form of a lump or mass - may begin in nerve tissues in the neck, chest, abdomen, pelvis, or, most commonly, in the adrenal gland, which is where Lillie's cancer was located initially. They may also spread to other areas of the body, including bone and bone marrow.

The cause of neuroblastoma is unknown, but most physicians believe that it is an accidental growth that occurs during normal development of the sympathetic nervous system.

By the time neuroblastoma is diagnosed, the cancer has usually metastasized (spread), most often to the lymph nodes, bones, bone marrow, liver, and skin.

Some treatments for neuroblastoma are very painful because they target the cancer cells which are part of the nerve system and healthy cells are also attacked which produces the pain. It is a relentless disease, often called "The Beast." Lillie was NED (no evidence of disease) for six weeks before the massive relapse of disease in her brain and bone marrow.

Neuroblastoma research receives little funding compared to other cancer research, but the Boytes hope to change that.
Encouraged by a network of friends and family, The Boytes will introduce Lillie's Friends Foundation to the local community April 11 from 10 a.m. to 2 p.m. at a Birthday Blast at The Children's Museum of Winston-Salem. The Boytes chose the date of April 11 because it is close to April 9, Lillie's actual birthday. Geared toward young children and families, the event is free and open to the public, though donations to the foundation will be accepted.

A variety of activities are planned, including an Easter egg hunt at 12 p.m., a Big Boom Bang Kids Band at 1 p.m. and inflatables, games, crafts, face painting, WBFJ radio live remote, giveaways and door prizes and a visit from the Easter bunny throughout the day. Information about the disease and the foundation will be available. A stroller-thon is planned for September.

About Lillie Boyte

Lillie was a beautiful, playful, charismatic two-year-old when she was diagnosed on October 12, 2006 with Stage IV Neuroblastoma. Just weeks before the diagnosis, she was a lively, active child attending dance class, playing with her big sister Hannah and starting preschool. In fact, the week before, Lillie was at the beach on a family vacation flying kites, chasing sea gulls and jumping waves. But almost overnight she began to exhibit symptoms of fatigue and irritability and she was taken to an urgent care facility that performed blood work which came back abnormal (hemoglobin 6.5 vs. normal 12.0 and platelets 22,000 vs. normal 150,000). The Boytes were immediately sent to the emergency room at Brenner Children's Hospital. After an overnight stay and multiple tests on Lillie, the Boytes received shocking news.

"We expected a routine viral diagnosis when she first got sick. Instead we went to four hospitals in three states chasing a cure for Lillie. We had no idea what we were facing, and that is one reason we have started this foundation. We hope that Lillie's Friends Foundation will be a clearing house of information for parents facing what we faced one and a half years ago. We also want to raise money to help the research teams that are working on a cure," said Michelle.

For more information about the Lillie's Friends Foundation Birthday Blast, go to http://www.lilliesfriends.org. For more information about Lillie's journey with cancer, go to http://www.caringbridge.org/visit/lillieboyte.