Monday, January 17, 2011

I have revamped, changed and improved things. This is just the preface. Which one do you like better?



When I saw Emm take her last breath I was forever changed. I had never seen anyone die before. I never seriously thought about what it would be like if she died or considered how I would react in that turbulent moment. My hand was stroking Emm’s baldhead when she exhaled for the last time. I literally felt energy leave her body and pass through my hand and forearm. With incredible force and speed I was overcome with indescribable, consuming sadness. Unfamiliar feelings burst out of me. I yelled to her, “Emm I love you, I love you. Please know that.” She was gone. What did she experience when her spirit left her body? The finality of death has a lasting sting. It was an intensely emotional, yet a powerfully spiritual moment and we shared it together as a family.

My little girl, Emmalee, (or Emm as we called her) was a feisty, Polynesian and Caucasian eight-year-old. She had no recognizable outward signs of illness before she was diagnosis with cancer on October 17, 2008. Cancer is indiscriminate as to whom it afflicts, but it is worse when it attacks an innocent child. She didn’t choose to get cancer and it was not possible for her to make a choice to cure her life-threatening disease. For her type of cancer and how far it had progressed there was not a cure. God knew that she could handle this challenge and placed her here so His work could be manifested through her.

My first wife, Camille, and I adopted Emmalee at birth. Emm was strong-willed and had a bit of a temper. She was intelligent and tested in the top tenth percentile academically on standardized tests. Emm had a lot of spunk and personality. People told us that she was wise beyond her years, yet she could always make us laugh. She had beautiful dark brown, curly hair and olive skin. Strangers would sometimes stop, stare and comment. “She is so beautiful.” I heard these types of comments periodically while at the store or just out in any public place. Emm came into this world in a special way and had an extraordinary mission while on earth.

We can allow the events of life to bring us to our knees and wait for the next blow to knock us all the way down or we can allow these events to bring us to our knees in prayer. This choice came for me in 2003 when Camille suddenly and unexpectedly died. Single parenting three children while working full time took a coordinated effort between myself, my parents and my sister, Kristy. Matt was eleven, Krystal was nine and Emmalee was three at the time. In January of 2005, I met a wonderful woman, Kara, and we married a few short months after a first date at Denny’s. Then, out of the blue, words I never thought I would hear in reference to my child were told to us in the ER. “She has a huge mass.” It was devastating news. How much more could we handle? So many questions that only time would answer.

Childhood cancers cannot be traced back to a lifestyle these kids chose or choices they personal made. Cancer is the unexpected and unfortunate mutation of cells that the body does not recognize as the enemy. These cells grow and spread, but are imposters masquerading as “friendlies”.

According to the Pediatric Cancer Foundation, around 10,500 Children under the age of fifteen are diagnosed with cancer in the United States each year. Ten years after diagnosis and treatment 75-80% will be cancer free. Each year around 1,500 kids die from cancer. Pediatric cancer kills more kids than Aids, Cystic Fibrosis, Asthma and Diabetes combined. Many cancers lay dormant and are not detected until they are untreatable. That’s the way it was with Emmalee’s cancer. She, along with too many other young children, discovered the cancer too late.

Having a terminal illness is one of the scariest and most difficult things anyone can face. It is like walking around with a bomb; knowing it may go off at any time. Waiting for this explosion is a life altering experience. When will it go off? How painful will it be? Why do I have this bomb inside me? Is there someone who can diffuse it?

We went to any and all lengths to find the person(s) who had the expertise to safely diffuse or get rid of Emm’s bomb. Family, friends and even people we didn’t know came up to us with information; juices, foods, remedies and advice. They told us about supposed experts who thought they had the knowledge or expertise to diffuse her bomb. Most often it turned out to be some untested method or person who meant well, but was unproven in the rigorous battle of this horrible disease.

We were still persuaded at times to try some of these remedies, except when it was anything to eat or drink, because Emm had difficulty holding things down. Each proven or unproven method brought hope, but our hope would be dashed again after a CT scan showed her elongated, grape fruit-sized tumor had not shrunk.

I prepared myself for the pain and disappointment that would follow after each CT scan. We still remained hopeful and full of faith that a miracle would take place. I don’t know if anyone truly understands the emotional trauma associated with all of this unless they have experienced it for themselves.

The pain of having a child with cancer ran deep and the rollercoaster ride was intense. The few difference between a rollercoaster ride at the amusement park and the one were on was that we could not see the inclines and step declines ahead, it was not for amusement and we did not voluntarily get on this ride.

I want you to ask yourself, how would I change my life if I knew I were dying or what would I do if I knew a loved one was dying? We are all dying we just don’t know exactly when death will occur or what type of death we will experience. If you did know when and how you would die, would you really do anything different? Would you wait until just a few days before your death date before making any changes? Just how close to death’s door would you have to be in order for you to change? Would continue living as you were until death came knocking or would you really change? You would then have to face the reality and would maybe have a moment of clarity as to how you would want to be remembered.

We never gave up hope for a miracle and knew that if it were God’s will Emm would live a long and healthy life. We knew that the odds were not in her favor, but we never told Emmalee that there was a good chance she would die. Early on a doctor basically told her that she didn’t have long to live and others would relate stories in front of her about someone they knew who died from cancer. Emmalee knew this, but she always had extremely strong faith. She handled her challenges with humor, dignity and God-given strength. She never gave up hope! She lived life to live. She didn’t live waiting to die.

As you read this book, contemplate what it would be like to have a ticking time bomb inside of you. Would you get up or give up? What would it be like to have a body ravaged by cancer? I also hope you will gain strength, hope and courage from her example and recognize a fight well fought by an amazing nine-year-old.

I hope you are able to see beyond Emmalee’s difficulties and know that she was meant to experience what she went through. I don’t know all the intricacies God has in mind, but there are many. There are many who have benefited from her experiences. Also, look at your life and the impact you have on others. Truly look for the love, compassion and kindness that God has shown you and given you. Do you share it with others and spread a little goodness around? Also, see the blessings in your life not just the misfortune.

We became closer to God as a result of Emm and her cancer and I hope you recognize a loving Father’s hand in Emm’s story and see it in your life as well. This was all part of a loving Heavenly Father’s plan. Emm was meant to come to Earth and live for a short time. In a way, I am jealous. She no longer has to labor and toil upon this earth with a physical body that is so fragile. I want you to understand more fully the emotions experienced by my little Emmalee and us as we all coped with the turmoil this horrible disease brought.

Emmalee’s influence is still being felt. Her story has touched so many people. Some knew her personally and some had never met her. People learned about her by word of mouth or by visiting her two blogs. ( or She also has a Facebook page, Dragonfly Wings for Emmalee. There are, as well, some YouTube videos. I put together one video about our trip to Disney World and another about her life and death.

Many people told me they felt like they knew Emmalee even though they hadn’t met her. It has been amazing to learn how many people have been influenced or strengthened by Emm.
While I was at a volunteer training with Make-A-Wish Foundation, I was asked to share Emmalee’s story with the 60 volunteers in attendance. The small portion of her story I shared seemed to impact quite a few in the audience as I saw several people wiping tears from their eyes. During the lunch break, a woman, who was in her 50’s walked over to my table. She stood a few feet from me and waited patiently while I finished a conversation about Emmalee with another volunteer at my table. When I finished she put her hand out, offering it to me.

“I just wanted to come over to meet you.” She said with sincere gratefulness in her voice. “I have to tell you that Emmalee is the reason I am here training to be a volunteer. I don’t know you or Emmalee, but I read her obituary in the paper a month ago and felt like I needed to help out. Her obituary is the only reason I am here today.”

This volunteer had no idea I would be at the training and I am thankful we were able to meet. It was always uplifting to know when Emmalee’s life had influenced someone enough to move them to action.

After Emmalee died, kids her age wrote to us and told us they admired her for coming to school right up until the time she died. Her classmates in fourth grade loved her more than we ever realized. There were many students who called Emmalee their best friend. After she died all the children in her fourth grade class had the opportunity to write some memories of Emm.

One little girl wrote, “She was a kind and loving friend. She encouraged me to love others and show them I cared. She was one of my best friends. I will remember her with all my heart. P.S. She’s probably having a great time watching over you.”

There were around 120 kids in her grade. She had attended the same school since kindergarten. Here are just a few other comments from these amazing fourth graders’.

“Sometimes she would tell me how she felt and other times she was silent. I could tell she was suffering. We were close in the first grade. She had a beautiful head of hair then. I just can’t believe she passed away. I had so much hope for her. God bless you.”
“I feel glad for her because she is happy now and can do things in Heaven. It won’t be hard for her there.”

“She was the bravest and most courageous girl I know. She was nice to me.”
“Emmalee was one of my friends in first grade. When I was sad she was there to cheer me up. I remember when some kids were picking on me. She was there to stop them. I miss her very much.”

“She was in my first grade class. I didn’t know anyone. She was the only one who came up to me and said, ‘Hi my name is Emmalee.’ She helped me through the year and helped me make friends.”

“She was nice to talk to if you were lonely.”

“I remember her getting pushed to lunch on the teacher’s chair because she was too weak.”

“Emmalee was a great friend to me. I loved being her friend. She was so awesome and a good example to me. She was my BFFEWWD. Best Friends Forever Even When We Die.”

These children were inspired by Emmalee’s tenacity and silent strength. They loved her and she loved them. You need to remember that these words came from fourth graders. Their comments were not just yearbook type of comments like “she was cool, and she played with me at recess”. They were heart-felt thoughts and feelings that had substance. Many high school kids might not be able to express these types of deep, sincere expressions of love that these elementary children were able to share.

One week before Emmalee died I felt the sudden, compelling urge to start writing about her life. I was so amazed at all the lives that had been impacted and influenced by her example that I sat down on my bed that night, pulled out my laptop and started writing. Little did I know that one week later she would take her last breath.


Anonymous said...

Hi Steve...what a story. You have gone through a lot in this short little life of ours. I am so sorry about the loss of your wife and your baby girl.

My husband took his life 2 years ago and it inspired me to write as is not easy to relive the emotions but I think critical in healing.

I am proud of you for opening up and sharing your writing. It takes courage. You obviously have that.

Here is my personal feedback but what do I know. :-)

I would have to say that I liked the first version. The very first line grabbed me emotionally and gripped me until the end. The first one seemed more straight from the heart from a Dad who lost his baby girl...more revealing of the pain you and the people closest to her experienced. The second was a little more focused on other people, the many nameless, faceless people that face challenges in life.

I like version that offers a little more insight into your personal relationship with Emmalee. Don't get me wrong...the second version is fabulous too!

I would love to hear what kind of feedback you get from others. Looking forward to reading the rest.

Susan Butler Campbell

Steve said...

Thanks Susan! I just sent you an e-mail

Abbie said...

Thank you for sharing this incredibly moving story. Your strength is far beyond words. Best of luck on your book and touching many more lives.

Steve said...

Thanks Abbie!