Love 4 Emmalee

2012-01-14T18:47:00.002-07:00

An explanation of grief and loss. My experiences with grief and Emmalee's book. Check out the link below.

2012-01-13T00:13:00.005-07:00

To my faithful, silent readers of this blog, and only to you right now, I am offering a 20% off coupon code at check out. It will only be available to you guys for one day only. 12:00am today 1/13/12 till 12:00am on 1/14/12.

So go to www.dragonflywings4emmalee.com and buy your book today

Where it says coupon code type in "dragonfly"

Thanks,

Steve

2012-01-10T15:05:00.009-07:00

http://www.ksl.com/index.php?nid=204&sid=18814407

Above is a great recipe inspired by Emmalee's love for salt and vinegar potato chips.

To purchase a book go to www.dragonflywings4emmalee.com

2012-01-03T19:40:00.003-07:00

I have been receiving some amazing feedback about Emm's book. Some can't put it down and others have been strengthened by her story.

"I could have read it from start to finish in a day if "life" didn't get in the way. I couldn't put it down! I've put off sending you feedback because I am at a loss for words to tell you how this book made me feel. As a parent of 3 of my own children I can only imagine the void I would have in my life without one of them. But the book was written in a way that I was able to feel maybe a fraction of the intense pain, long suffering, healing, & most importantly the love our Savior has for each of us. It touched me to the core. I believe that Emm and I could sit and chat for hours about our love of food together! She is a kindred spirit to me where that's concerned

"Just finished reading your book. Loved it!!! It truly inspired me and I think everyone should read it. Thanks for writing it and sharing your personal experiences and thoughts." Mary Ann

"I just read your book and I’m so glad you wrote it! It is a very powerful book. I didn’t want to stop reading (except to blow my nose and compose myself after agood cry). I just fell in love with Emm! I had to stop reading a few times (okay all through the book) because I kept crying but it was well worth it. I’m glad you wrote so openly and honestly. It felt like you really put your heart into it. When I was reading and even now
just thinking about Emm I can feel her love and it makes my eyes water. Thank you writing this and allowing us (the world) to read it." Michelle R.

Friends, this is a MUST read book. I just finished it myself and it is life changing...I highly recommend ordering it. DeAnn

Just finished the book!! AMAZING!! Thanks for sharing such a tender part of your life! I know that Emm is near your family and is so proud of all the good you are doing in her name! Thanks again Steve! God bless you and your sweet family! Jodi

Steve I sat down and read Emmalee's book from cover to cover in a couple of days and I am so at a loss for words to describe how it made me feel. Steve, thank you so much with your courage to write it and to get it published, and to share this very painful part of yourself. I feel like I've known you my whole life. Much love and gratitude, and for a very beautiful 2012! Suzy

2011-12-28T23:49:00.002-07:00

What would you be thinking? All kids with cancer are the bravest kids in the world. Emmalee heard people tell us how they knew someone who died of cancer. I was in the grocery store and a woman came up to me and in front of Emm told me how someone in her family died of cancer.

I don't believe she had malicious intent at all. She was just trying to identify with me and my situation. I think we all have put our foot in our mouth at times, but this happened frequent enough that it became annoying. I never knew, until the end of Emm's life, how often she thought of death. She told us, while she sobbed uncontrollably, that she thought of death every day. Scans, doctors appointments, comments like these and being bald kept these thoughts too close to her innocent mind.

I think we all need to be a little more careful about what we say and in what company we say it. Be careful when you are trying to identify with someone that your not trying to one up them or being insensitive to someone who might be listening.

Emm was strong and brave and pushed past many of these challenges. She taught us how to face death with strength and courage. We need more people like Emmalee

One more story that I love about Emmalee was when she was in the hospital and in a lot of pain. It was 2am and she called out to me to come pray with her. I was lying in the makeshift chair/bed in the hospital room. She said the prayer I will never forget her sweet, sincere prayer. She thanked Heavenly Father for things, then she started to cry and asked Heavenly Father to help her get better. She ended her prayer with, Please help that no matter what happens we will all still have faith.

True faith and inspiration from an angel.

To read more about Emmalee visit http://www.dragonflywings4emmalee.com Her story will strengthen and inspire.

2011-12-15T14:57:00.003-07:00

If you knew you had a terminal illness, what would change in your life? Now think back to being eight or nine years of age. As an eight year old, imagine doctor coming into your hospital room and telling your dad, in front of you, that you had 6-12 months to live, at most 2 years. What would change. For Emmalee she thought about death every day and did not want to die because she said, "I will miss you guys too much."

How did she live? She laughed, loved, showed courage, strengthened her faith and grew in so many ways. She never gave up hope for a miracle.

Emmalee story is finally done. It is available on www.dragonflywings4emmalee.com

There is a section at the end of the book dedicated to providing wisdom and support to those grieving a loss. Also, for those who do not know what to say to the grieving there is some advice for you as well.

2011-11-20T17:43:00.002-07:00

This is the book cover! Mike Magnus, who is very talented, donated his time to this project. Heather Mickey took this amazing photo of Emm. I am so thankful for them

I am so excited that the book will be out by Christmas. I am donating $5 of every book sold to Make-A-Wish. The first printing will only be 2,500 copies.

This is for Emmalee! I know her story will inspire all who read it.

I will provide a website when it is ready. I just can't wait to get my hands on the first copy.

Steve

2011-09-29T21:59:00.002-06:00

When Emm took her last breath, I was forever changed. I had never seen anyone die before. I would not have wanted it any other way, but it is still difficult to think about. There are three moments that are the most painful for me.

1. Hearing the words, "She has a mass in her liver".

2. Telling her she was going to pass to the other side soon.

3. Watching her take her last breath.

This is the week she all of a sudden started sliding down the hill toward death. We could have stopped her from sliding, but at what cost? About 5:30am the nurse came in her room to take her blood pressure. There wasn't one. All of a sudden there staff in her room moving faster than I had ever seen them move. Unplugging devices. Within minutes she was in the ICU. There was a doctor barking orders to six or seven others, like a drill sergeant. I was asked several times, "Do you want us to do everything possible to save her?" Two times I answered back, "yes." After a few hours our answer would change, when we found out how bad things really were.

Intubating could have killed her. They said her heart could have been permanently damaged and it was only functioning at 10% capacity. We decided not to do anything, but let nature take it's course. She made it though the day and the night. The doctors did not expect that. Why was she still fighting? She wanted to be home to die. She hated the hospital. The hospital arranged an ambulance to take her home. We rode with her. The doctors said there was a good possibility she would die in the ambulance. Not Emm, she was tough and patient. She waited till we arrived home. I carried her to her favorite place in our house, the couch in our front room. Twenty minutes later she took her last peaceful breath. She was gone.

My little Emmalee,

I miss you so much Emmalee! I think about you every day. I look at your friends and see how big they are getting and I always wonder how big you would be. I know you know how much I miss you and I know you miss us as well. At the same time I know you are happy and are close by and that makes me feel so good. I look forward to the day that we will meet again. It feels good to write this to you because I can get my feeling out. I don't cry often, but writing allows me to express myself more openly. I am so happy that you are out of pain. You have inspired so many people and I know you will continue to do so. There is a hole in our family that will never be filled. We are still learning to live with it and walk around it. You will never be forgotten. We miss you asking, "What's for dinner". Seeing you in our front room watching TV or playing your DS. I miss you telling me that, "girls rule and boys drool". I miss holding your hand, while walking you to your school class. I especially miss picking you up on Fridays after school. I miss your love of food and wanting to try all sorts of new foods. I miss your smile and your positive attitude. You faced death with courage and grace. There were so many who admited you for this.

Thank you Emm for coming into our life.

Love,

Dad

2011-09-07T22:18:00.003-06:00

CAN YOU LET GO?

The summer before Emmalee died my parents came over to our house. We sat on the front porch. Emm was inside, sitting in her usually favorite place on the couch, watching TV and playing her DS.

The tone off my conversation with my parents started with the normal superficial pleasantries. We talked about Emmalee and how she was doing, the tests, scans, chemo pill she was taken and how she was emotionally handling having cancer. The conversation quickly turned serious. My parent are not the type to beat around the bush. My mom cut to the chase. "Could you accept it if Emmalee died?"

October 17, 2008 was the day she was diagnosed with liver cancer. When we were told she had a mass in her liver, I vividly remember flashes of the cemetery, where we actually ended up burying her, burst in my mind along with many other images and thoughts. I don't believe there has been a term yet coined for the powerful force that hit me in that moment.

Thoughts of her dying were like a heavy shadow that hung with me constantly. It is not as if I had never thought of her possible death before, but this questions made it real. Could I accept it if Emmalee died? In that moment my strength even shocked me. I calmly responded. "If it is God's will, I can accept it." What in the world was I saying? She is not going to die. Even in that moment, after I said those words, I wondered if I really could accept her death. If she did die what would it really be like?

October 1, 2009 was the day this reality hit. There is no way to prepare for a loved one's departure. It hit me with such a surprisingly powerful force. What was worse the diagnosis of cancer or her death? They both had a sting that will never go away. I can say that I accept God's will but the hole that has been left is something I continue to side step every day. I miss her but know her death has reason and purpose beyond my understanding.

What difficult things in your life do you need to accept right now? I am curious what things people are having difficulty accepting and why. I wonder what the barriers are to accepting something difficult?

What does acceptance really mean?

2011-07-06T17:09:00.003-06:00

Why "Dragonfly Wings for Emmalee" as the title of her story? A month before she died, during a photo shoot, a dragonfly flew above Emm's head. It hovered, flew away and then came back to the same spot above her head. It was an amazing moment and I don't believe it was a coincidence. A poem was written by her Aunt Jenae with this title. I asked Jenea if I could use this as the title of Emm's book. She agreed.

2011-06-01T17:24:00.002-06:00

Maybe this is for me more than anyone else, but I hope someone else will benefit from it.

I have been a mental health counselor (LCSW) for over 20 years. I have experienced the death of a wife and a child. Emmalee's death was much more painful that Camille's death. My kids felt the opposite. Their mom's death was more painful. We all experience death differently. Why does anyone have the right to judge how much pain we should feel or for how long?

I have heard other counselors say, "That person needs to move on or let go. It is time to get on with life."

To some degree this is true. We can't allow a loss to consume us and put us in a pit of despair. However, that doesn't mean it is wrong to cry, feel sad or remember our loved one and feel the familiar twinge of pain associated with this loss. The other day I heard a counselor say, "It has been four years since her husband died, why is she still crying over it?"

I believe this is the wrong attitude to have. It tells this woman that she is defective in some way for crying four years after her husband died. Why can't we still feel the pain 20 years agter a loss? As a counselor I may have had this attitude when I was young and inexperienced. I now know that grief is messy and there are no rules that govern it. Whatever we feel it is okay.

I took my son to the MTC today in preparation for his 2 year mission to West Virginia. It was a great experience. I know I will communicate with him through letters and hear from him over the phone twice a year. With Emmalee I will not see her again or communicate directly with her until the resurrection. Today's departure of Matt was a breeze compared to losing Emm. I hope that doesn't sound rude? It is just a perspective.

I say let's grieve our losses and experience them and be okay with the emotions that come up relating to our loved ones death. Don't feel bad for crying years after a loss.

2011-01-17T21:36:00.001-07:00

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

DRAGONFLY WINGS FOR EMMALEE

Preface

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. (caringbridge.org/visit/emmaleehavertz or love4emmalee.blogspot.com) 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.

2010-10-25T22:37:00.002-06:00

Updated version!!! Would love your comments.

shavertz@gmail.com

DRAGONFLY WINGS FOR EMMALEE

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; something unexpected, tragic and completely unrelated to any choice we ever made? It could be an accident, a natural disaster or sickness.

My daughter, Emmalee, was a feisty, half Polynesian and half Caucasian eight-year-old little girl. She had no recognizable outward signs of illness before her diagnosis with liver 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.

Childhood cancers cannot be traced back to a lifestyle the afflicted chose or choices they personally 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”.

Emmalee didn’t do anything wrong to get cancer. It was just the hand that she was dealt. A person who smokes tobacco knows that they are taking a risk of obtaining many illnesses, an alcoholic risks liver disease and family problems and the over-eater risks diabetes and other related health problems. There are people who complain about being in debt then turn around and purchase a new car or boat. These are just a few examples of how people’s choices caused their stress or problems. A lot of these problems can even be reversed if the person makes different choices.

In 1988, I started my first job in the mental health 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 life was. They ideally should be looking at themselves asking, how did I get myself into this mess how am I going to get myself out? In 1993 I received a license to do psychotherapy. I earned my Master of Social Work at the University of Nevada Las Vegas and also worked as a therapist in Vegas. I counseled many people with gambling problems. These people made the choice to gamble their money away and would then complain how difficult their life was. Accountability is the first step in empowering yourself to solve your problem versus remaining a victim of your poor judgment.

Over the centuries people and their problems have not changed. People have always struggled with addictions, financial problems, gluttony, etc. We all have and will make poor decisions. These bad judgments usually result in an increase of our stress. When we have made poor decisions, we hopefully learn from our mistakes and commit to make better choices. Too many times we complain about being wronged when we really should be taking accountability for our actions.

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 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 at Island View 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 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.

Introduction

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 being a therapist. We have to be compassionate, but at the same time keep a safe, emotional and professional distance.

The pain of having a child with cancer ran deep and the rollercoaster ride was intense. Finding good out of this bad was difficult, but we managed it.

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. If you did know, 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? Chances are, you would continue living as you were until death came knocking. 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.

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 and given you. Do you share it with others and spread a little goodness around? Also, see the blessings in your life and not dwell on the misfortune.

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.

This volunteer had no idea I would be at the training and I am thankful we were able to meet. It is always uplifting to know when Emmalee has touched someone enough to make a difference in their life.

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’.

“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.”

Chapter 1 School

She gently 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 only using her peripheral vision. 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 fear of loneliness. 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 we 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.

Kara, her mom, worked in Salt Lake and left early each morning, so it was my pleasure to take Emmalee to school in the mornings. We decided, with encouragement from the hospital staff, to try and create as much normalcy as possible for her. We wanted Emm to be at school and be with her friends. Despite how difficult is was to leave Emmalee each morning and go to work, we also decided that having two insurances and two incomes was necessary considering the expenses that were mounting.

Emmalee didn’t respond or look at the receptionist. 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 school’s 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. Kara and I 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, CT scans 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 even hopeful thoughts.

My job was much more flexible than Kara’s. I was truly blessed to have this job and not to be extremely busy while Emm was sick for that year. I also had the ability to take off work when I needed to. My job was only 15 minutes from Emm’s school, where Kara’s work was 45 minutes away. Her job was much less flexible.

I tried to help Emmalee by telling her to be brave. She quickly shot back at me with some venom and 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 without too many emotions spilling out onto the floor. I took a slow, deep 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” she said with 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, I don’t feel well and I don’t think I can do this.”

I leaned down and, with tones of gentleness that even surprised myself, I 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 of a teenager who was under my care at Island View, a residential treatment center for troubled youth. It was interesting, even at work, there were times I said things or there were 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 God 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 at the moment was there to greet us. Emm had been sick with a sore throat the previous day so her teacher 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 away from 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.

The classroom emptied but 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. I needed to be at work and there was no urgency or time to wait for Kara to leave work to come take her home.

“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. Her classmates were still in music class and so it didn’t matter as much. Her cries sounded like someone imitating a tiny motorboat, the only difference was her lips were not vibrating together. She was able to sound this way without the use of her lips.

“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 with me, even though on many occasions I either picked her up from school or 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 broviac 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 meant she could die.

I took another deep 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 at work 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, my son, 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 helped Emm pick out her outfit the night before and found a cute blue knit hat that Kara’s mom made for her. The hat had a pink flower on it. Emm wanted to wear the hat so she could cover her baldhead. Kara helped her get ready and 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.

2010-10-10T13:07:00.005-06:00

When Emmalee was first diagnosed a doctor came into her hospital room and proceeded to tell me, in front of her, that I should enjoy the time I had left with her. Some people's intentions are to shove reality so far down your throat that it will never come back up again. I knew her odds weren't good, but I didn't want her to know. Now she did. How would she cope, being only eight?

Below is the first part of Emmalee's story. Please e-mail with your interest to read more at shavertz@gmail.com

Updated Version of Emm's story

2010-10-04T23:11:00.001-06:00

DRAGONFLY WINGS FOR EMMALEE

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? 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.

Introduction

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. (caringbridge.org/visit/emmaleehavertz or love4emmalee.blogspot.com) 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.

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’.

“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”

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.

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.”

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.

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.

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.

2010-08-03T23:45:00.001-06:00

This is an e-mail I received from a boy in Australia who came across her video on YouTube.

"I'm still trying to spread the word about your book. I really hope you don't think im some crazy stalker person because i send you all these emails. It's just, your daughter filled a huge gap in my life (which may seem weird since im only 18) now i am so grateful for everything i have and do in life i cant even imagine how i could possibly ever thank her for that. I have to admit I've ever actually seen a child with cancer before, i have stated at Childhood Cancer Support but there has been a virus going around the hospital so the kids have been quarantined. however i had to take something up to one of their houses and the mother was holding her 2 year old daughter who was bald from chemo and had a tube in her nose. it completely broke my heart. Childhood Cancer Support is a place near the children's hospital that consists of 10 houses and the children and their families stay there for free while they are being treated and its not funded by the government, we have to fund-raise to keep it going. do you have anything like this in the US? im also giving white blood and platlets every two weeks now, it takes an hour and a half because they take quite a bit but it goes directly to cancer patients. any ways again i have Emm to thank for inspiring me to help others, and i wanted you to know that even though she is an angel she has helped me in ways i never thought anyone could, i like to think that someday i will get to meet her and give her a great big thank you."

Andrew

2010-07-07T20:20:00.001-06:00

This is the updated first chapter. Please e-mail me as shavertz@gmail.com if you are interested in reading more. Thanks, Steve

DRAGONFLY WINGS FOR EMMALEE

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? Most childhood cancers cannot be traced back to a choice that the child 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”.

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. In 1988, I started 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 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 could go on for pages.

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. 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.

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. 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 things, 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.

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.

My desire is for you to actually feel what Emmalee felt and experience our hope, fears, pain, mental anguish and joy as we traveled this difficult yet strangely beautiful journey. 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. I hope you are able share in our ups and downs and understand more fully the emotions experienced by my sweet Emmalee as we all coped with the turmoil this horrible disease brought.

Many people told me they felt like they knew Emmalee even though they had not 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 of the fourth graders’ comments:

“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 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 felt like 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.

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.”

Sure, she was 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”

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.

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.

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.

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.

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 wasn’t behind much at all and tested in the top ten percent on standardized tests.

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.

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.

“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 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.

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 eyebrows. They had fallen out as well because of the chemo, but were one of the first things that started growing back.

2010-03-17T01:39:00.002-06:00

Please e-mail me at shavertz@gmail.com and simply write, "I am interested in reading your book"

I need 1000 e-mails and right now I have 100.

Thanks,

Steve

Dragonfly Wings for Emmalee

2010-01-23T13:53:00.005-07:00

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

DRAGONFLY WINGS FOR EMMALEE

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. (caringbridge.org/visit/emmaleehavertz or love4emmalee.blogspot.com)

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.

2009-10-03T15:40:00.004-06:00

Over the last year I have pondered what I would write on here if Emm died. Well, that time has come and I am not sure what to say. I just want to share a small portion of what transpired. Kara and I rode with her in the ambulance back to our home. I learned later they they did not think she would survive the ambulance ride home. Emmalee just wanted to be in her own home. I think she waited to pass until she could be comfortable in her own home. I had the opportunity to carry her from the gurney to her favorite spot in the house, our couch in the front room. The hospice workers met us here and began talking to us preparing us for what was next. While they were talking to us her breathing slowed and a few minutes later she took her last breath. She died within 20 minutes of being home.

Bitter sweet is the feeling. Glad she is out of pain, but we will miss her so badly. The house will be empty without her.

I will let everyone know about funeral arrangements.

We will have a viewing for Emmalee on Monday October 5th from 6pm to 8pm at the Fruit Heights 6th ward chapel 901 S Mountain Rd in Fruit Heights. Her funeral will be at the same location on Tuesday October 6 at 1pm with a viewing prior to that from 11:30am to 12:30pm

Thank you all for your love, kindness, support, prayers and encouraging words. We truly feel the prayers of so many. Most of all thank you for your memories and thoughts of Emm, our beautiful little girl. Let her life be an example to us all.

2009-08-23T12:17:00.001-06:00

There are some great pictures of Emm at blog.heathermickey.com. She is a local photographer who took some awesome shots of her.

2009-06-25T15:35:00.001-06:00

Emm said the water relaxed her. Zion June 09

2009-06-25T15:03:00.001-06:00

Finding Gems Zion National Park June 09

2009-06-25T14:47:00.004-06:00

Annie June 09 Tuacahn Theater in St. George
A

2009-06-25T14:43:00.001-06:00

Dad and Emm in the hot tub Zion National Park June 09

2009-04-26T16:45:00.000-06:00

Emm and Krystal

2009-04-26T16:38:00.001-06:00

Emm and Krystal

2009-04-26T16:34:00.000-06:00

Emm and Kara

2009-04-26T16:23:00.001-06:00

Emm, Matt and Krystal on Easter Sunday!

Emm in a new hat!

Emm Easter egg hunting in our front yard.

2009-03-18T15:40:00.002-06:00

Emm and her Webkins

Olive Garden day before she went into hospital

Birthday candles!

2009-03-16T17:38:00.000-06:00

Please see caringbridge.org/visit/emmaleehavertz for updates on her progress.

2009-02-10T22:36:00.001-07:00

Emm at the Lays factory being greeted by Cheester. February 09

2009-02-10T22:10:00.003-07:00

Raising her star at Make-aWish February 09. Video clip

2009-02-10T22:04:00.001-07:00

Her star she raised at Make a Wish

2009-01-26T18:46:00.000-07:00

One of the buildings at GKTW and our villa

2009-01-26T18:41:00.000-07:00

All of the Disney crew.

2009-01-24T23:47:00.001-07:00

Emm leading the way. This is how we rolled!!

2009-01-24T23:32:00.002-07:00

Every Thursday Santa is at GKTW. He made a star just for Emm in the sky.

2009-01-24T23:09:00.002-07:00

Under the sea!

2009-01-24T23:05:00.001-07:00

Wow!!! Splash Mountain is fun!!!!

2009-01-24T22:59:00.001-07:00

Emm watching Fawn sign her book

2009-01-24T22:54:00.000-07:00

Emm talking to Belle

2009-01-24T22:48:00.001-07:00

Woody wanted to hold Emm's hand.

2009-01-24T22:42:00.001-07:00

Micky and Mini came to GKTW along with some other of characters to visit the kids.

2009-01-24T22:38:00.000-07:00

Emm being loved by Pluto

2009-01-24T22:33:00.002-07:00

Her first autograph was from Snow White and Dopey at Epcot.

2009-01-24T22:00:00.002-07:00

Emm getting a special viewing of some dolphines at Sea World

2009-01-12T22:57:00.000-07:00

Emm being silly 1/12/09

2008-12-28T13:30:00.001-07:00

Emm feeling pretty good 12/28/08

2008-12-28T13:19:00.000-07:00

12/28/08 After church

2008-12-26T16:01:00.002-07:00

KSL's crew and Emmalee

Asleep in the Car 12/24/08

Ordering at Training Table Christmas Eve Day

Seriously cute! Christmas Eve day

2008-12-17T18:07:00.002-07:00

Please go to caringbridge.org/emmaleehavertz for more information on Emmalee.

2008-12-16T16:10:00.018-07:00

<- Ready for appointment 12/15/08

(below)Emm at her class Christmas party 12/16/08

2008-12-04T18:59:00.003-07:00

Emm, Matt and Krystal right before church. Emm is wearing a scarf given by some friends that was hand made in Africa. We kept her away from people and you can see she had a mask. She lasted about 45 min.

Emm with grandma 12/4/08 at her house right after we went to the hospital to have some labs drawn.

2008-11-30T12:50:00.000-07:00

Just a cute picture

2008-11-27T19:55:00.002-07:00

Thanksgiving at the hospital. Emm had grilled cheese for dinner. She held most of it down. Kara is in her PJ's cause she stayed the night.

2008-11-25T19:52:00.001-07:00

Tree for Emmalee that will go into the Festival of Trees. Please support the Festival.

2008-11-19T16:24:00.001-07:00

Today a therapy dog came in to see Emm. It really lifted her spirits. 11/19/08

2008-11-18T16:07:00.000-07:00

11/18/08 Ready to go!

2008-11-18T16:01:00.000-07:00

11/18/08 Leaving to go back to the hospital

2008-11-18T15:52:00.001-07:00

TUESDAY, NOVEMBER 18, 2008 03:03 PM, CST
We just arrived back at the hospital a couple of hours ago. They will start her chemo tonight at about 7pm. She will get both chemos tonight. One right after the other. One is the most powerful chemo and the chemo that causes to most severe vomiting and naseau. They have to get her up every two hours to urinate cause the chemo will do damage to the bladder if it sits in there.
They will do more chemo tomorrow and hopefully we will hear back from the insurance on whether or not the experimental medicine will be covered.
We were very touched by the story that KSL did on Emmalee's class mates who have shown how much they love, support and care for Emmalee. It is very clear that all of her friends want her better and will do whatever it takes to help her.
We want to thank all those at the school who organized this caring effort and called KSL to alert them of the significant care and compassion that was being shown toward Emmalee. It is truly amazing!
Emm is still a little worried about her hair loss and how she looks. Sometimes she just doesn't want to be seem by anyone and other times she is ok as long as she has a hat on.
Thanks again to everyone for so much love and support. Please pray fervently that this round of chemo will be successful and less traumatic on her body.

MONDAY, NOVEMBER 17, 2008 05:18 PM, CST
Some of the boys in Emmalee's third grade class shaved their head today to support Emmalee. KSL TV heard about it and is going to do a story tonight at 6:00pm.
We are heading into the hospital tomorrow at 1:30pm to admit her for another round of chemo.
Some other pictures are posted on the love4emmalee site.

SATURDAY, NOVEMBER 15, 2008 11:19 PM, CST
There are very few children in the world that are diagnosed with the type of cancer she has. Most adults who have this type of cancer get it because they have developed cirrhosis of the liver or have Hepatitis B. Emmalee has neither. They have no idea why or how children get this cancer.
We took Emmalee to Kara's brothers house where we celebrated Kara's mom's birthday. Krystal and I went to Target and bought Emmalee an outfit to wear. Emmalee saw what Kyrstal was wearing and wanted to look like her. She had a Down vest on with a long sleeve shirt.
Emmalee did really well for the first 10 minutes. She then got tired and had to go lay down. It was good to get her out and she seemed to enjoy seeing her cousins.

FRIDAY, NOVEMBER 14, 2008 04:51 PM, CST
We read Emmalee a lot of the notes on this website, cards and letters yesterday. It makes her feel good that so many people care. She even got emotional hearing some of the comments people have left for her. She misses so many of you and wants so badly to get back to normal. There are times when she feels good and seems back to normal, but those times are few and far between. She does not want to hear any talk about having to go back to the hospital on Tuesday. However, this morning she was in quit a bit of pain and asked to go back to the hospital. Thank goodness for medication that helps her get through these times. The love and support of everyone helps us get through.

2008-11-16T13:27:00.001-07:00

Kara, grandma and Emm

2008-11-16T13:22:00.000-07:00

Aunt Mindy just gave her some gifts. She got a smile out of her.

2008-11-16T13:20:00.001-07:00

She is starting to get a little irritable.

2008-11-16T13:16:00.001-07:00

Emmalee was craving chips and salsa. She ate and then 10 minutes later she was wiped out and had to go lay down.

2008-11-13T16:14:00.000-07:00

Matt without hair and Emmalee with hair.

2008-11-13T15:16:00.000-07:00

She is home! This is her sisters crazy hair hat.

2008-11-13T15:14:00.000-07:00

Emmalee coming home on 11/12/08.

2008-11-08T22:40:00.000-07:00

Another view of her sleeping with her eyes open. You can see two of her hats in the upper right. She loves the pink one.

2008-11-08T22:33:00.000-07:00

11/8/08. She is finally asleep for a few minutes. She sleeps with her eyes partially open. She has had a lot of belly pain today and is still on some heavy pain meds

2008-11-08T21:41:00.002-07:00

Krystal and I took her outside (against her will) to the wishing pond. We were letting her throw some pennies in the pond. We had to drag that big cart with her.

2008-11-08T21:39:00.001-07:00

2008-11-08T21:30:00.000-07:00

2008-11-08T21:21:00.000-07:00

SATURDAY, NOVEMBER 08, 2008 05:22 PM, CST
Kara stayed the night last night and it was a rough one. Her tests are all showing that she is doing well but she is still in pain. She has been on Morphine like pain meds most of the day today. Something just doesn't seem to be right.

Krystal and I went out and bought her a bunch of hats today. She said she wanted some "crazy" hats, but we couldn't find any. It may be setting in that she has cancer because her hair is gone. She looked in the mirror last night and screamed "I am bald" This was really sad. She did not want her brother to even see her last night. We keep telling her she is beautiful. The picture is of her today in one of her hats.

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FRIDAY, NOVEMBER 07, 2008 08:59 PM, CST
The catheter was taken out today and so the only tube she is connected to right now is her central line in her chest where they are feeding her, giving her meds, and drawing blood. Her ammonia level is now normal and her white count is coming up. This basically means she is getting better just in time to start looking at another round of chemo that will again knock her down. We want to be so careful this time so that she does not end up with another infection and back in the hospital between chemos. She will stay in the hospital at least until Monday. She was scheduled for another round of chemo on 10/11. I hope they postpone it at least for another few days so we can get her home and enjoy her feeling good for a few days.

She is feeling better each day, but is still cranky and irritable at times throughout the day. She still complains of being so hungry, but wont drink much. She has graduated to being able to have jello and broth. Just tonight she ate a little jello but refused the broth.

A blog was developed for her by one of her aunts. Caringbridge only allows for a minimal number of photos. So we are going to try to add more photos to this blog over time.

It is love4emmalee.blogspot.com

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THURSDAY, NOVEMBER 06, 2008 09:12 PM, CST
Last night Kara's mom asked Emmalee what she has learned from all this. Emmalee responded "I Know that God loves me and everyone else loves me to"

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THURSDAY, NOVEMBER 06, 2008 08:09 PM, CST
It is 8pm and Emmalee's cousin who is in cosmetology school came up and cut of most of Emmalee's hair. It has been falling out fairly quickly now and has been itchy to her. I think she looks great! Emmalee is asleep right now so she hasn't seen it yet but knew what we were doing. We had prepared her for this and she was ok with it.

Today was up and down according to the nurses. Kara and I had to work today so we had my parents and a sister in the ward up at the hospital. Everyone has been so willing to help and we are so appreciative. Overall, I think she is better today. She is still not drinking very much, but she keeps saying how hungry she is. She started having bowel sounds today so that is good.

2008-11-08T20:55:00.000-07:00

She did not want to get up at first. She just wanted to lay there. It was a beautiful day. This is about 4pm on 11/8/08

Past Journal Entries

2008-11-05T11:07:00.000-07:00

TUESDAY, NOVEMBER 04, 2008 08:14 PM, CST
Wow! We finally found out what happened in surgery. (At 3am communication just is not very effective.) In order to have air in your abdomen there has to be a hole some where. There was no hole that they could detect in her intestine, but at one point there had to be a hole and they think that it may have closed on its own. They took all of her intestines out of her body and checked them. They were swollen and infected. Since they were in there they decided to take out her appendix. They also noticed that her colon was swollen. This type of infection happens at times to people on chemo when their white count is down. Emmalee will be so prone to infections going forward.

We also learned that chemo will continue when she has recovered from surgery and her white count is up. It could take anywhere from a few more days to a few weeks. Going forward they will not use the chemo that they think may have caused the hole in her intestine. There is a new drug they may try with her as well.

Today Emmalee has been in so much pain that she has just cried and moaned most of the day. It just seemed like the pain medication was not keeping up with her pain. They finally gave her a dose a Ativan along with the Morphine and it did the trick. She finally relaxed and fell asleep for 2 hours. She woke up at about 4 or 5 pm and had to go to they bathroom but still cant get up to go. We just keep telling her to go and she had gone in a bed pan earlier in the day. However, she hates that. They used a ultra sound to look at her bladder and discovered that she had about 1 liter of urine in there. They were scrambling to get a catheter but she was able to pea about half of it out into a bedpan. Then they finally go the catheter in and she go the rest out. I guess pain meds can cause you to retain urine and make it difficult to go.

Now at 8:40pm she is relaxed and asleep. However, I just learned that we need to take her down to get another X-ray of her abdomen. They want a baseline to see if the air is leaving.

Hopefully, tomorrow we will see some improvement.

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MONDAY, NOVEMBER 03, 2008 09:06 PM, CST
This was just another one of those horrible days where we felt inadequate, useless and unable to provide comfort. She got out of surgery at 3am and did not have enough pain medication to take the pain away. She was extremely thirsty prior to her operation this morning (but could not drink as it would cause problems with the surgery) she woke up from the surgery very thirsty, but they would not let her drink and still wont let her drink. She cried because of pain, thirsty and needing to go to the bathroom. They assured me for 6 hours that they catheter was working, but it wasn't. Emmalee kept begging me to carry her to the bathroom. She cried over and over that she had to go. She did not want to wet the bed. I put towels under her and told her to just go. She continued to refuse. The nurses and doctors told me and her that it was just a sensation she was having and not to worry about it. Six hours later she finally just let go and wet through 3 bath towels. I was so mad and let them know how upset I was. She also continued in pain and finally in the afternoon got her own pump to help control her pain level.

We have received so much conflicting information today we don't know what is right. I was told last night that chemo may not be an option anymore because of the potential it would create more holes, but now we are hearing certain chemos might still be ok. I was told a hole was repaired in her large intestine, Kara was told this afternoon there was no hole. We do know that she needs to heal from this surgery before we look at next steps.

It was so difficult not being able to help or comfort her and hear her cry for a drink. I felt like I was lying to her by saying that the cathiter was taking taking helping her and it wasn't.

Today was very stressful, but we are thankful for all the support and help, in the variety of ways, we are receiving.

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MONDAY, NOVEMBER 03, 2008 05:53 AM, CST
Emmalee had emergency surgery this morning at 2:00. She had a hole in her large intestine where air was seeping out and causing her to have the severe abdominal pain. They went in and opened her up to repair the hole and were successful. However, The chemo therapy some how caused this hole and there is risk that more holes will be caused by chemo

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SUNDAY, NOVEMBER 02, 2008 06:50 PM, CST
We had another rough night. Emmalee had stomach cramps most of the night and a couple of bloody noses. She continued to have stomach cramps today and slight bloody noses (mainly in the nostril that her NJ tube is in). Steve checked her temperature around 4:30 today and it was 101.4 deg. I called the on-call Oncologist and he suggested that we admit her. Before we left we checked her temp. again and it was 102. We are in PCMC again and anticipate a 48 hr. stay. Emmalee has been mostly asleep since her fever came on. Her ammonia levels have gone down, however, so have her blood counts. We need to be extra careful that she doesn't get sick. Several blood tests are being done right now to find out if she has an infection. Most likely she does and they will find out where it is. They already have her on an antibiotic just in case. We'll write more as we find out exactly what her status is. Thanks again for all your prayers and kind messages. We have all enjoyed reading them to Emmalee.

Kara

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SATURDAY, NOVEMBER 01, 2008 07:41 PM, CDT
Emmalee had a little better day today with off and on pain and nausea. She has a difficult time with certain noises at certain times. Some times it bothers her to hear people talking or even the TV bothers her. Kara and I got some sleep last night because Matt stayed up with her and helped her. We are so grateful for all the prayers, dinners, offers for help and the kindness of everyone. This is still very shocking and overwhelming. We just can not believe that Emmalee has to suffer this. She asked her mom why this is happening to her. That is just a tough question with no easy answer for an eight year old

FRIDAY, OCTOBER 31, 2008 06:17 PM, CDT
Emmalee had a really tough night. The medicines we put in the NG tube make her nausiated. She has about 9 meds that need to be given. It is a little much for her. Some of the meds we crush up, add water, put in a syringe and then add in feeding tube. She said she doesn't want any trick or treaters coming by cause the noise would bother her. Please continue to pray for her.

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THURSDAY, OCTOBER 30, 2008 09:05 PM, CDT
Emmalee just arrived home at about 8:00 this evening. We are glad to have her home and she seems more comfortable at home. We have the home health nurse coming back to teach us how to feed her and give her medication through her NG tube. (It goes from her nose to her small intestine)We left the hospital today with about 10 perscriptions which she needs various meds around the clock. She can not have any food that has protein, which pretty much eliminates all foods. That is why she has the NG tube and a special dietary formula.

She had one dose of chemo before she left the hospital today, another out patient dose on November 5 and will go back in-patient for another 3-5 day round of chemo on November 11.

It is a little overwhelming right now.

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WEDNESDAY, OCTOBER 29, 2008 08:11 PM, CDT
Emmalee is almost back to normal functioning. She is still week and being feed by a tube but she is interacting and even a little feisty. She has also smiled a couple of times today. What a huge relief! We are grateful for the prayers for her. We have told her that her name is in many temples and a huge number of people are praying for her. We are mostly to Heavenly Father for hearing our prayers and the angels that are watching over her. We all really believe that and her blessings have confirmed that angels will be here for her. Emmalee is a fighter and we are right beside her battling against this horrible disease.

She is doing so well that they may even consider to have her come home tomorrow. We are so excited for this. Emmalee just want to be home in her own bed.

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TUESDAY, OCTOBER 28, 2008 08:02 PM, CDT
Emmalee woke up today!!! It has been since Friday afternoon that she has basically been confused irritable and unresponsive. This morning she started responding to questions and talking. She has still been throwing up and they continue to give her medicine for this. It was very exciting to see her talking and responding this morning. At the same time it is very draining for all of us and mostly for Emmalee. She is still weak and sleepy. I believe it is partly because she has not had any nutrition in her body since last Thursday. The chemo made her lose her appetite. Her ammonia level actually went up today but she came back to us anyway. When they started feeding her that is when she came back to us. We just want to get her home!!!

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MONDAY, OCTOBER 27, 2008 08:01 PM, MDT
At 3:30 today they started giving Emmalee nutrition in her feeding tube. She didn't like it and kept trying to pull the tube out so they tried again at 5. I feel better knowing that she is getting some kind of food in her. Sugar water can only go so far. The nurse said Emmalee keeps calling for me. I'm glad to be here with her now. I worked today and it was hard being away from her. She is a little more coherent tonight. Steve said they still changed quite a few diapers today so that's a good sign she's getting more ammonia out of her system. Steve is staying another night here so that I can continue working. My boss has been so nice and understanding. Steve and I were away from work all last week taking care of Emmalee and now Steve is doing most of the work as he was able to go on FMLA and use some of his sick leave. I haven't been at my job long enough to qualify but we will do our best to coordinate our schedules for Emmalee. It's been a crazy year for us. I missed a lot of work when I first started my job with Altius because of the flu, etc. and had to use most of my time off. I used a lot last week so I will try to ration what's left. I hope we get Emmalee back soon. It's hard to not be able to talk to her and hold her. She has responded to a few things I've said tonight so Steve and I are crossing our fingers that she will "come to" by morning. Once we get her home she will be much happier. I have to thank everyone again for all your kind thoughts, words and prayers. Everyone is so generous and we are overwhelmed by all that you do. We love you and know you haven't given up.

Kara

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SUNDAY, OCTOBER 26, 2008 04:29 PM, CDT
Emmalee's ammonia levels are still high. They are giving her medicine to help her have bowel movements. Apparently the ammonia has to come out of her this way and not through her urine. She has been working at getting this out of her.

Just this afternoon she woke up enough to tell Kara that she wanted to go home. This was good but heartbreaking. She is just not well enough to come home yet. We hope over the next several days she can get home.

Steve

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SATURDAY, OCTOBER 25, 2008 12:59 PM, CDT
Emmalee had a very rough night. She was agitated, in pain, whining, moaning and confused most of the night. They could not figure out what was wrong. At about 9am they did a test on the amount of ammonia in her body. It was very high. Her liver is unable to break this substance down right now. They had to put a feeding tube down her to start some medicine that could break down the ammonia.

I could not watch because a couple of nights ago they put a tube from her nose to her stomach and I had to help hold her down while she screamed that she couldn't breath and she was drowning. She got a bloody nose during this process and that just complicated things. It is so hard to watch her while she is in pain.

She is resting at the moment, but it will be days before we can get this problem corrected. Sounds like it may be a long term problem. Needless to say she will remain in the hospital for a few more days at least.

Please continue to pray for her.

Steve

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FRIDAY, OCTOBER 24, 2008 07:22 PM, CDT
Thank you all for your thoughts, prayers visits and those who came over to help clean and sterilize Emmalee's room and other areas of the house

We had some great news today. Emmalee had a bone scan to determine if the cancer had spread into her bones. It showed one trouble spot inside her right shoulder, so a follow up x-ray was done to take a closer look. It confirmed that the cancer has NOT spread into her bones. That is awesome news!!!

She also had a ultra sound today and no problems were reported with that. They were looking to see if there was any blood or fluid in her belly.

It is too early to tell if the Chemo therapy is working. They will do another CT scan in a few months to assess its effectiveness.

Steve

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FRIDAY, OCTOBER 24, 2008 07:12 PM, CDT
One of the questions that is asked frequently is how did we discover the cancer. On Wednesday October 15th Emmalee's sister Krystal was playing with her and Krystal's hand just barely touched her stomach right below her sternum. Emmalee started crying cause it hurt so badly. Matt (her brother) and Krystal lifted up her shirt and noticed a distension right below her rib cage. They thought she was tightening her belly and told her to relax her stomach muscles. She wasn't able to so they told mom. (Emmalee was at her grandmas the day before and was fine and she even went to Lagoon with her sister that same day). We watched her over night and continued to check her and when we felt her upper abdomen (where the distension was) it continued to be tight and very painful even to the slightest touch. We took her to the family doctor the next afternoon who referred us to PCMC for evaluation. That is when Kara and I received the horrible news that she had a tumor that had infiltrated her entire liver. She had a biopsy on Saturday 10/18 and then the final diagnosis came on Wednesday 10/22.

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THURSDAY, OCTOBER 23, 2008 12:30 PM, CDT
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THURSDAY, OCTOBER 23, 2008 11:31 AM, MDT
Thank you for your love, concern and interest for Emmalee. As you know, she is an amazing and beautiful girl, full of life and spirit. We truly love her!
I have been asked by the Havertz family to post the most current information about Emmalee's condition. The family is so appreciative of all of your outpouring of love and support! Your prayers, visits, cards, gifts, meals...everything has meant so much. Please continue to exercise faith in their behalf and to keep them in your prayers! They ask that we continue to be full of hope and faith!
Emmalee was officially diagnosed on Wednesday with "fibrolamellar hepatocellular carcinoma with portal vein involvement" and is consider to be at a stage III.
This is a serious cancer of the liver. The positive aspects are that it is the slower growing form of this type of cancer and it has not spread to her lungs. It is unusual for a child to be diagnosed with hepatocellular carcinoma, as it typically affects older individuals. Because there is not a large group of children affected, the outcome is uncertain. Children often respond differently to situations and procedures than adults and it is important to stay positive.
Yesterday, the family learned that the growth has spread to the portal vein. There is one lymph node that has been identified as being swollen and most likely affected as well. Because of these two issues, for now, Emmalee is no longer considered to be a candidate for a liver transplant.
On Tuesday evening, Emmalee began chemotherapy. A central line has been put in place through which the chemo will be administered. She will spend three to five days with inpatient chemo and then receive additional outpatient chemo in between a three-week cycle.
One expected side effect is that Emmalee will lose her hair. She will also experience nausea and sickness. Her white blood count will also be compromised. During this time she needs to be especially careful to stay as healthy as possible. Your visits are appreciated, but please be especially sensitive and not visit if you are sick or have been exposed by family, school, work (or elsewhere) to any illness.
While statistically this is a difficult cancer to fight, we are not giving up hope! Emmalee has a strong spirit and is fighting very hard. The medical community is doing all that they can to best treat Emmalee. It is our job to ask for the Lord's help.
Please pray for Emmalee, Steve, Kara, Matthew and Krystal. The family asks that we specifically seek for an understanding of God's will, the ability to exercise enough faith to see a miracle, and that doctors can be inspired to best treat Emmalee.
Again, thank you for all of your love and concern. Your efforts are greatly appreciated.
With love,
Christy Wagstaff (544-3356)