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Thursday, April 2, 2009

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.

9 comments:

Summer said...

What a brave and honest post. Our family will be there to help you celebrate the love your family has for one another, the compassion you have for other families facing crisis, and your trust in God. Much love and many prayers.

Anonymous said...

Thank you so much for sharing your story. I followed Lillie's sight and am looking forward to celebrating on April 11th!

K.C.B. said...

I also followed Lillie's story through the CaringBrigde site last year. What a beautiful, strong, family you have. You are an inspiration in the way you have chosen to help others through the difficult struggle you endured. I look forward to bringing my family to the event next weekend and I hope it is a huge success.

Ashley H said...

What a humbling & inspiring story to read. Thank you for finding the strength & profound inspiration to share it. Lillie was so blessed to have had such a wonderful family during her short time here. Keep putting one foot in front of the other, even on the days you'd rather not. God Bless you all.

Charlotte Smarty Pants said...

Thank you for sharing your incredible story. My nephew had this "Beast" 11 years ago but somehow beat it. I am amazed at your strength and ability to find something positive in such tragic circumstances. You are an inspiration to us all - we can only hope to be as strong as you. God bless you and your family and sweet Lillie.
XOXO from the Charlotte Smarties:-)

Jennifer said...

I remember seeing the Lemonade Stands for Lillie at our swim club and I honestly cannot believe it has been a year and half since she passed. I am so proud of your strength, as I know each day over this past year and a half probably felt like a lifetime. It sounds like you have a terrific support system. I hope your birthday blast is a great success and that you can help other families in your same position.

Amy said...

This Birthday Blast sounds like a wonderful idea. I hope to be there.

Anonymous said...

We will not be in town to attend your event, but we will be thinking of you and all the lives you are touching with this great cause.

Kara said...

We took our 2 kids on Saturday and had a great time. The Easter egg hunt, Dewey's cupcakes and slide were a big hit! I couldn't help but cry when the doves were released, just thinking of what you have and contineu to endure. Lillie's spirit for life will live on and give hope to others through this foundation. I am continuously reminded of how lucky I am for the family, health, love and faith that surrounds me. I hope Lillie's Friends continues to bring attention to this disease. Thank you for making me aware and giving me the opportunity to give to this worthy cause.

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