Monday, October 04, 2010

Updated Version of Emm's story



Freedom to choose is a gift given to us at birth. In America it is a right that has been won for us by the blood, sweat and valiant effort of many brave individuals. When we exercise this awesome responsibility we can make our lives more enjoyable or more miserable. What happens when something occurs that is not linked to our choice? Something unexpected, tragic and completed out unrelated to a choice we made. It could be an accident, a natural disaster or sickness.

Childhood cancers can’t be traced back to a lifestyle they chose or choices they personally made. It 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”.
My daughter Emmalee was eight years old when she was diagnosed with cancer. She didn’t make a choice to get cancer and it was not possible for her to make a choice to cure her life threatening illness. For her type of cancer and how far it had progressed there was not a cure.
Is it different when someone’s stress or problems are a result of their own choice versus an unexpected event? Emmalee didn’t do anything wrong to get cancer. It was just the hand that she was dealt. If you complain that your life is so miserable you first need to ask yourself, did I get myself in this mess and is there anything I can do to get myself out of it. It is ironic, but it seems that too often people who have caused their own misery complain the loudest.
Since 1993, I have had a license to do psychotherapy. I received my MSW at UNLV and while working down in Las Vegas. I saw people make choices to gamble their money away and then complain how difficult their life was. In 1988, I started my first job in the field working as a technician in a drug and alcohol facility. Over the years I have seen people make choices that led them down the paths of addictions, pain and misery and then complain how difficult their life was.

Over the centuries people and their problems have not changed. We all have made poor decisions, which resulted in an increase of our stress. When we have made poor decisions, we can hopefully learn from our mistake and commit to make better choices in the future.
Currently, I work counseling teenagers who have made choices that they never dreamed they would make. I frequently ask them, “As a little boy or girl did you aspire to be in a treatment center when you became a teenager?” The answer has never been, “yes”. I don’t believe any young child dreams about becoming addicted to drugs, alcohol or pornography. Small seemingly insignificant choices led them deeper and deeper into the forest of despair and darkness.

They chose to smoke for their first cigarette; self mutilate, act out in a school class, disobey household rules, click on their first pornographic site, or shoplift for the first time. The list could go on for pages.

When Emmalee was first diagnosed, I pulled all the kids together on my caseload and invited them to see how fortunate they were to have the opportunity to make choices that would make them healthy again. I explained to them that she didn’t have the opportunity to make any choices that would get rid of her disease. Her cancer was terminal. She had stage 3 Hepatocellular Carcinoma. Her entire liver was infected with a huge tumor. A liver transplant or resection of her tumor would save her life, but she was not eligible for either because her tumor was too large. She didn’t choose this predicament nor could she choose to change it.
Simply put, all it would take for these adolescents to get better would be a change in their attitude and a change in just a few lifestyle choices. The choice Emmalee could make was to live life in the present and enjoy each day to it’s fullest. This powerful difference between Emmalee and these teenagers would hit me so strong that, at times, it would cause me to become bitter inside. These teenagers really had it easy compared to Emm.

There were times when I wanted to leap out of my chair and start to shake these kids to wake them up. Sometimes as I listened to parents or these kids complaining about how bad they had it, in my head I would be thinking, “At least you don’t have cancer or at least your child is not terminal!” When I felt this way, I always remained compassionate, patient and kind, but inside I was a little angry, stressed out and just plain tired.

These teenagers were so fortunate and didn’t even realize it. There is such an incredible contrast when you ponder this difference.


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 or 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 would just throw it up. 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.

As a therapist there is no way I could completely empathize with all the challenges my clients experienced and remain sane. I tried to put myself in every client’s shoes to imagine how they might feel, but there was no way for me to fully understand their pain unless I actually experienced it. The bind is that there is no way to actually do that.

I will speak for myself, but I know that many therapists feel this way. I had to find a way to sound empathetic and say the right things to express empathy, but not actually feel it. It would just be too painful to feel everyone’s pain all day long. That is one of the difficult jobs of a therapist. We have to be compassionate, but at the same time keep a safe emotional and professional distance. I really could not experience their pain. It would be too emotionally demanding.

I don’t want you to experience the emotional pain and difficulties Emmalee went through, just understand them.

I want you to ask yourself how would I change my life if I knew I was 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. If you knew, would you really do anything different? Maybe a few days before your death date you would really start to change things, but would you really change your overall nature?

We never gave up hope for a miracle and knew that if it were God’s will Emm would live a long healthy life. We knew that odds were not in our favor, but we never told Emmalee the odds. Deep down I think she knew, but she always had extremely strong faith. She handled her challenges with humor, dignity and God given faith.

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 had in mind, but here are many. There are many who have benefited from her experience. 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. See the blessings in your life and not 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 physically 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 prompted 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 quit a few in the audience as I saw several people wiping tears from their eyes. At lunch time a woman who was in her 50’s walked over to my table. She stood a few feet from me and let me finish answering a question asked about Emmalee by another volunteer at my table. When I finished she put her hand out, offering it to me.

“I just wanted 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.”

After she 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, “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.

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 Mac Book Air and started writing. Little did I know that one week later she would take her last breathe.

Chapter 1 School

She reached out to grab my hand with a wide sweeping motion. Not with a sense of panic or shyness but her motive was to make sure she caught hold of my hand. It felt as if her arm and hand were a big fishing net. When she landed her catch, she did not squeeze too tightly for fear that she might give away her feelings of panic or create premature loneliness in herself. She knew the intense feeling of dread that would soon follow and she did not want to feel exposed just yet.

The receptionist at the school said, “Hello Emmalee.”

Little did I know, but this would be her third to last day of school here upon this earth and one of the last precious times I would have taking her to school and walking with her to her classroom.

Emmalee didn’t respond or look at her. She had a hoodie over her head, eyes focused on the ground making her feelings obvious. It was all very clear to the receptionist by now that she did not want to be at school or was feeling sick. Most of the staff at her school knew Emmalee and were empathetic. We were only ten minutes late but she still needed to check in with the office. It was the rule.

There were other parents in the office checking their kids in and the receptionist said with reassuring but hesitant cheerfulness, “I will check her in, you can just take her to class.”
I’m sure she wondered how Emm was feeling and if she would even make it through the day. Several times a week she would either not be at school or be checked out early because she wasn’t feeling well.

“Thanks, I appreciate it”

As I heard myself say those words, I realized I was trying to be cheerful, but I sounded tired. The last year had been tough and I was doing my best to remain emotionally and physically healthy. However, most days I lacked drive and motivation to do anything that was not a priority.

Her class was all the way at the other end of the building down the second hallway. It was the furthest classroom from the office. Her normal pace of walking was slow anyway, but because of the cancer and the oral chemotherapy drug she was taking her energy was zapped, making her pace even slower. Often times we would have to carry her if we walked more than a hundred yards or if we remembered to bring her wheel chair we could get places more quickly. Her pace continued to slow with each step until we stopped just before one of the two doors to her classroom.

She was in a big class of 56 kids this year, which was taught by two teachers. It seemed to be working well and had worked well in the past. We were a little hesitant at first but these two teachers had a lot of experience and they had shown a lot of care and concern for Emm.

I knew that this morning’s emotional turmoil was just beginning. This was a typical morning when she actually made it to school. It was late September and she had maybe been to half of the days of school so far this year. The other days were taken up with her being sick, doctor’s appointments, a CT scan and a PET scan. It was a full time job in itself taking care of Emmalee. Some days she was the only and main agenda item and often times my thoughts were preoccupied with crazy, irrational, depressing, and sometimes-hopeful thoughts.

I tried to help her by telling her to be brave, but she quickly shot back at me with some venom, but I recognized the underlying fear in her voice, “I hate being brave. I’m sick of it.”
I didn’t engage this because my goal was not to have a discussion about being brave, but to get her into her classroom with out too many emotions spilling out onto the floor. I took a breath to calm myself.

“Let’s go in,” I said with my calm soothing counselor voice.

She stiffened and shook her head. “I’m not ready yet” her voice trembling and again shaking her head along with her torso in vehement disagreement. I recognized this body language, and knew she was saying, “I am scared and don’t feel well and don’t think I can do this.”
I leaned down and with tones of gentleness that even surprised myself and whispered, “I’ll go in with you and we’ll sit together in the back.

I had some time to burn before I had to meet a family at Island View where I was a counselor for troubled teens. It was interesting, even at work, there were times I said things or ways that I said things to the teenagers that surprised me. I would often think after saying something, “where did that come from?” I believe we all have help from the other side and many of us are blessed by things that people say or do that they normally may not have said if they were not inspired in some way.

By now I wasn’t surprised when things came out of my mouth that seemed to enhance my own ineptness or even make me sound smart. I still marveled at this and thanked God for blessing me in this way time and time again.

She acquiesced and shuffled toward the table in the back. We sat down and the teacher that was not in front of the class teaching was there to greet us. Emm had been sick with a sore throat the previous day so she touched her shoulder and said, “

Welcome back Emmalee, we missed you yesterday.”

Emm didn’t respond. Sitting down gave her more opportunity to hide her head under her hoodie. Both teachers periodically tried to engage her in conversation with minimal luck. I began to help her with her times tables, which she was supposed to have learned last year, but she had missed about half of the school year because she was in the hospital so much. Amazingly, she wasn’t behind much at all and tested in the top ten percent on standardized tests.

She was at least calm now and working on several rows of times tables I had written down for her. She did very well and the teacher taught her a trick with the nines, which she picked up quickly. I felt a sense of relief now and hoped to make my exit.

I said again softly, “I have got to go to work now”

She grabbed my hand and pulled it to her heart and began shaking her head with conviction, “Don’t go dad, don’t go please don’t go.

I looked behind her into the classroom across the hall so Emmalee and her teachers could not see me start to tear up. I collected myself and heard the bell ring, indicating it was time for music class. The invitation was extended to Emmalee, but she refused.

We sat a little longer at the table in the back of the classroom and I tried to present options to her. She said she felt like throwing up and that she hurt all over, so I went to the sink and retrieved the pink throw up pan we had placed in the classroom the first day of school. I set it in front of her just in case, but I didn’t get the feeling she was going to throw up.

Emm threw up on average of about five or six times a week because of the oral chemo medication she was taking. We became experts in the warning signs of her getting ready to vomit and today just didn’t feel like one of those times.

It was time to put some pressure on her and give her a terrible choice that I was pretty sure she would refuse.

“Emmalee,” I spoke with slight sternness, “I have a family I need to meet at Island View and I can’t bring you with me.

She began to cry more openly and loudly, but the other kids had gone to music class and so it didn’t matter as much. Her cries sounded like a tiny motorboat, the only difference was her lips were not vibrating together.

“This is so hard” I thought to myself. “I may just have to give in and take her to work with me.” I reluctantly pondered the ramifications. Today was the type of day that it really was not good to have her at work even though on many occasions I either picked her up from school and brought her back to work or just took her to work with me. I was lucky to have a job in which I had that option.

“I don’t feel well she said. I can’t make it, I just can’t.” She pressed me harder emotionally and holding on to me physically, pulling me closer to her with her hand so that I could not leave.
I asked, “ What is wrong?”

She, in a surprisingly angry whispery voice said, “I hate the world”
I tried to keep it light and said, “I’m glad you don’t hate me.” I kissed her on the forehead. Her lack of response confirmed to me she still loved me and I was relieved to not hear a response. Her anger meant that she was tired of constantly feeling sick, throwing up, diarrhea, having no hair, being different, being stared at all the time, two tubes hanging down her chest called a central line that had to be flushed out every day, the see through bandage that had to be changed weekly and worst of all worries that a nine year old mind could not comprehend. We knew that she knew that having cancer could result in the end of her young, short life.

I took a breath and said, “Emm I am going to have to stay at work till 5:30 today and you will have to sit bored on my couch when you could be home watching TV by 3:40.

This was it! I saw the progression of thoughts in her head as her demeanor changed from sad, sullen, angry and depressed to pensive and liking the idea of being at home watching TV. You see watching TV was her favorite thing to do. She loved to watch the Food Network and Disney Channel. Rachel Ray was one of her favorites. She nodded her head in agreement. I finally had my out.

I hugged her and told her to ride the bus home after school or if things got really bad she could call and we would pick her up.

She ended up calling at 2:30 reporting she was sick. Most times when she called me feeling sick I was in a position to pick her up, but today it was not possible. Fortunately, Matt was just getting out of school and was able to pick her up. It happened to be picture day as well. I wanted to make sure she got her picture taken. That was the last photograph taken of her before she died. I am so grateful she stayed that day.

Kara had set clothes out for her that morning and found a cute blue knit hat Kara’s mom made for her. It had a pink flower she could wear to cover her baldhead. She also put a touch of sparkles on her face and head. That was one Emm’s favorite things to have mom put on her face. It made her feel pretty. Just for the pictures that day a touch of mascara was added. Kara also put some lip-gloss on and straightened her not fully grown back eyebrows. They had fallen out as well because of the chemo, but were one of the first things that started growing back.

No comments: