Saturday, January 23, 2010

Dragonfly Wings for Emmalee

I am working at getting my book about Emm published. Please read the prelude and first chapter and let me know if you would like to read more. I would like to take the number of people who are interested in reading the rest of the book to a publisher so they will be more likely to publish it knowing there are already interested readers. Thanks for your help! Steve


Prelude- 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? Cancer for the most part cannot be traced back to someone’s agency. 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”.

Emmalee 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.

I have a master’s degree and a license to do psychotherapy. I started, in 1988, working as a technician in a drug and alcohol facility. Currently, I work counseling teenagers who have made choices that they never dreamed they would make. I frequently ask them, “As a little boy did you aspire to being in a treatment center when you grew to be 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 lead them deeper and deeper into the forest of despair and darkness.

The fact is that their choices caused their misery. 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, and shoplift for the first time. The list goes on.

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 better. Emmalee did not have the opportunity to make any choice 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. Again, she did not 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 choices. Emmalee couldn’t choose to get better, but could choose to live life in the present and enjoy precious moments. This powerful difference between Emmalee and these teenagers would hit me so strong that, at times, it would cause me to get very bitter inside. These teenagers really had it easy compared to Emm.

There were times when I wanted to scream, while I listened to parents or these kids complaining about how bad they had it. In my head I would be thinking, “At least your child is not terminal!” When I felt this way, I always remained compassionate, patient and kind, but inside I was fuming.

These teenagers were so fortunate and didn’t even realize it. Even the saddest of cases at my place of employment paled compared to what Emm had to face because no matter what, she could not simply make a choice to correct her sickness. There is such an incredible contrast when you ponder this difference.

The kids, who suffered abuse, death of a loved one or other traumas, still had the ability to make some choices to get healthy again. All of them because of these traumas made choices to get into drugs or other negative behaviors. None of their diagnoses were terminal. Yes, they had pain and sorrow and difficult lives, but their own choices either created or exacerbated their problems. It was clear they had an opportunity to get better and live healthy lives if they so desired.

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, but most often it turned out to be some untested person or method who meant well, but was unproven in the rigors of battle of this horrible disease.

We were still persuaded at times to try some things, except when it was anything to eat or drink 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.

No one will ever fully know what cancer patients suffer or the family members of cancer patients go through until they have walked in their shoes. I hope that as you read this book you will come to know Emmalee, understand her struggles and understand what it is 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.

This book may be difficult to read because of the emotional impact you may feel. However, I believe it accurately describes the emotions experienced by a little girl and her family coping with the effects of this horrible disease.

Emmalee’s influence is still being felt. She has touched so many people and many we don’t know personally. People learned about her by word of mouth or by visiting her two blogs. ( or

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 touched many in the audience. At lunchtime 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.”

There were many people who were impacted by Emmalee. Some never met her, they only heard about her struggles. Others knew her personally and watched her courageously and gracefully suffer in virtual silence. 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.

The kids in her fourth grade class 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 of the fourth graders’ comments:

“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 courage and strength. They loved her and she loved them. You have got 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 that many high school kids might not be able to express.

I was so impressed by what was happening all around Emmalee that one week before Emmalee died I felt the sudden compelling urge to start writing about her life. I sat down on my bed that night and 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 kind of felt like her arm and hand were a big fishing net. When she landed her catch, she did not squeeze it 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 so they could mark her as being in attendance that day. It was the rule.

There were others 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 am sure she was wondering 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 being 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, doctors appointments, a CT scan and a PET scan. It was a full time job in itself taking care of Emmalee. Some days Emmalee 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 kill before I had to meet a family at Island View where I was a counselor for troubled teens. It was interesting, even at my work, there were times I said things or ways that I said things to the teenagers that even surprised me. I would often think after saying something, “where did that come from.” I do believe that 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.

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 suppose 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 was not really 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 out for her. She did very well and the teacher taught her a trick with the nine times tables that she picked up very quickly. I felt a sense of relief now and was hoping 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 back 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 to let the kids know they were to go to their music class. The invitation was extended to Emmalee but she refused.

We sat there 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 got up and went to the sink and retrieved the pink throw up pan that 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 barf.

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

“Emmalee,” I was now talking with slight sternness, “I have a family I need to meet at Island View and I can’t bring you with me. She now 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 with me 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 was pressing 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 that she still loved me and I was relieved to not hear a response. Her anger just 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 now 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 come pick her up. Well, 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 our son, was just getting out of school and was able to pick her up. It just happened to be picture day and so I wanted her to make it through to get her picture taken. That was the last photograph taken of her before she died. I am so glad she stayed that day.

Kara, Emm’s mom, had set clothes out for her that morning and found a cute blue knit hat that Kara’s mom made for her which had a pink flower that she could wear to cover up he 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 eyebrows. They had fallen out as well because of the chemo, but were one of the first things that started growing back.


Jodi Redford said...

I am just getting on to read this for the first time, and I am so grateful that you had done this! It is so touching to hear of your family's experience through all of this. It gives a better insight to what you all had to deal with. I know we won't fully understand all that you did endure, but you writing these things and posting them here for all of us to read is so wonderful. Thanks for doing it! I want you to be able to publish this book about Emmalee. I hope all is well with Kara and her pregnancy! The video of Emm on YouTube was precious! Please keep us updated with you and your family! Know of our love for you all! Love, The Redford family

Steve said...

Thanks Jodi, We are hanging in there. Kara's pregnancy is going well. I appreciate you sharing your thoughts.


Tom Bailey said...

This is a very touching and poweful story how ou connected with the lady that is volunteering because of your daughters challenge.

I wish you the kindest thoughts possible.

Best regards,
Tom Bailey

Jenae said...

Hi Steve,
I just found out about your book and I am really excited to read more. We miss Emmalee so very much. Hope all is going well.

Audrey said...

I just received an email from your sister-in-law, Monica. She and I went to school together. Reading Emmalee's story has been very touching and I would be interested in reading more. Feel free to use my name when taking your book to the publishers.
Kind Regards,
Audrey B. Peterson

Candace said...

Please add my name to the list. Your story is ver touching.

Christian said...

I decided to check and see if there was an update for some reason today. I am so glad I did. I look forward to reading the whole book when it is published. It is amazing to glimpse into your family's and Emmalee's world. We will never truly understand all of your pain, but it is precious to get your perspective. I'm sure your book will help many people who face similar situations and those who just loved Emmalee and the family.
I'm glad to see as of January that Kara's pregnancy was doing well. I hope all is still well with her and the whole family. She may be getting near the end at this point. I've forgotten her due date.
We think of you often and pray for you too. If you have more written I'd love to read it.
Love, The Carlson Family

Christian said...

Steve, I didn't realize I was signed in as Christian, This is really Julie Carlson.

Steve said...

Thanks Julie for your comment. I need to get your e-mail address. Next time you check send me an e-mail. I am going to post soon on caringbridge.