Remembering Lillie and Helping Others

By Guest Blogger Michelle B

If you ask most people about their biggest fear or imagine their worst tragedy, they would likely say losing a child. My worst fear was realized in 2007.

My husband and I were living a relatively fairytale life with two beautiful, healthy children (Hannah 4 and Lillie 2 ½). In October 2006 after a great vacation at the beach, my husband and I would find ourselves in a room at Brenner Children’s Hospital where a team of doctors would tell us that our beautiful, healthy little girl had stage IV cancer. How could this be? We were just ordinary people. Surely they had the wrong diagnosis, the wrong little girl. After all, she was running around at the beach just five days earlier flying kites, chasing birds and jumping waves. Doesn’t someone with cancer look sick? Don’t they act sick? This is a misconception I’ve now come to realize. Our little girl, Lillie, had a disease called Neuroblastoma.

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, the average age of diagnosis is 2 ½. 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.” Neuroblastoma research receives little funding compared to other cancer research, but we hope to change that.

The doctors told us about the disease and treatment plan. After chemotherapy, radiation, surgery, possible bone marrow transplant and other experimental therapies she had a 30% chance of survival. It was a nightmare I couldn’t wake up from. I would go to bed and wake up but still be in the nightmare. Over the next 10 months our family would travel to four hospitals in three states chasing a cure for Lillie.

Lillie finally received great news in April 2007: no evidence of disease (remission). The timing was perfect as we celebrated the birth of our third daughter, Eva, in June 2007. However, the good news would be short lived. Just six weeks after being declared NED, the disease would take a terrible turn. Lillie relapsed with the cancer coming back in her brain and bone marrow.

Lillie was finally cured of this relentless disease in August 2007 when she went to heaven. The aftermath of Lillie’s death left our family with heartache, a loss of innocence, a wandering spirit, lack of purpose and a need to redefine our new “normal” life. How do you do it, people ask. How do you go on? My initial answer was “What choice do I have? I have two children who need me. After such a loss, my girls can’t lose their mom too.” But, after a little time has passed I’ve come to understand that the only way a mom really goes forward after losing a child is by strong friends surrounding me with God’s love and His undeniable, unwavering grace.

So, my position now is to be thankful for the gift of Lillie. What a perspective I have gained through her life, to be a better mom, better friend, and better wife. This life is only something we pass through and make the most of while we’re here, Live it to its fullest and remember what’s really important. In many cases we cannot change our circumstances but we can change how we react to them and we can change for the better. We can be a better person and make a difference in our children’s lives and those around us. I would be fooling myself and everyone if I were to say that I have it all figured out and that the pain in my heart doesn’t overwhelm me at times. But, I choose to honor Lillie’s memory by helping other families going through this “crisis of belief."

So I say, if you lose a child or have a tragedy of any kind, hope is not lost. If you seek, you will find strength and purpose to love, laugh and live again. And given the unique perspective, maybe do them even better than before.

Encouraged by a network of friends and family, The Boytes have started a foundation called Lillie’s Friends Foundation. Lillie’s Friends is committed to honor children fighting neuroblastoma and help families realize their hope.

The foundation will be officially introduced to the local community on April 11 from 10 a.m. to 2 p.m. at a Birthday Blast at The Children’s Museum of Winston-Salem with an Easter Egg Hunt, inflatables, face painting, crafts, games, Big Bang Boom Band and much more. 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.

Learn more about Lillie’s Friends at www.lilliesfriends.org.

Posted by Triad Smarty Pants at 5:00 AM