Caylee's Story

February 9, 2009
By HemiLiz SILVER, Helena, Alabama
HemiLiz SILVER, Helena, Alabama
6 articles 4 photos 2 comments


Caylee Elizabeth Johnston was born June 27, 1998. She was welcomed into this world by her Parents, Nadia and Jason Johnston, and her older sister, Hannah. Her family called her their, ' Beautiful, bouncing, baby girl.'

She grew up to be even more beautiful than she was at birth. She grew long blonde hair that curled at the ends and her eyes shown a brilliant shade of cerulean. She was the mother to all the kids in the neighborhood. If one had a scraped knee, she was by their side with a band-aid and a hug. If one of the little ones was being picked on, she would rescue them from the bullies. But, a tragic thing happened to her when she turned seven.

She began having excruciating headaches that were accompanied by nausea and dizziness. Nadia, worried about her daughter, took Caylee to the doctor. He thought they were migraines and prescribed a medication to help prevent them. But, they continued. After seeing several doctors, and running thousands of tests, Caylee was sent to St. Jude's Children's Hospital. On the morning of January 31, 2005, Caylee's disease had a name. Anaplastic Astrocytoma. AA for short. AA, is a rare, malignant, brain tumor. It is found in only an intimate group of children around the world.

Caylee underwent multiple surgeries to try and remove the tumor. But, because of its location, only a small portion was able to be removed. She received chemotherapy and other radiation treatments to try to reduce the size of the tumor. She was given various medications to see if they would help. But, nothing worked. Her tumor continued to grow.

Caylee became a writer. She wrote in her journal every event that took place. She wanted to remember everything that happened to her. She also used it as a way to clear her thoughts, feelings, and emotions. She wrote to help her to understand what she was going through.

She touched so many lives through her disease. She was well known in her small town of Savannah, Georgia. She gained support from locals who read about her. They donated money, food, and other items to help her family. Some wondered how she handled such a terrible prognosis. She began letting certain people read parts of her journal to explain how AA took a toll on her life and the lives around her.

Caylee became an instant hero to those whose lives she touched.

Chapter One '

June 3, 2008

The last wish I had (before I am said to die) came true today. After I was diagnosed with Anaplastic Astrocytoma (AA), I began watching House M.D. I immediately fell in love with Dr. House, played by Hugh Laurie. He gave me hope that one day I could be cured, just like his patients. Although my AA has not been able to be terminated, I still hope to have him cure me. My wish was to meet Mr. Laurie. After I told my doctor about my wish, he made numerous phone calls to make my dream come true.

I was napping when I heard the rap on my door. My doctor came in and announced that I had a visitor. Then, in walked Hugh Laurie! I was shocked, flabbergasted even. All I could do was grin. I could not believe that Hugh Laurie was standing next to me! We chatted for awhile. I loved his accent, a sort of British-American mix. When he had to leave I was devastated. He quickly turned my frown upside down when he handed me his 'flame cane.' He autographed it and told me it was all mine. He then presented my doctor and me with a check worth $1.5 million dollars to go towards AA research. I cried, knowing that this money would help so many children in the future. It came too late for me though. I know I do not have much time left.

I am leaving Hugh's cane to my sister, my best friend. She will enjoy it more than anyone I know because she shares the same love for House as I do. I love her so much. I am going to miss her greatly. I am going to miss my parents too. They have stood by my side and prayed with me over the past years. Words cannot describe the feelings I have towards them and how much I love them. I thank God for them everyday. I know I could not have lived this long without them. Thank you Mom, Dad, Hannah, and God. Thank you for everything.

As the priest spoke, all eyes were focused on him. Some were stares of disbelief. Others were filled with tears. Young children sat fidgeting, not really grasping what was going on. Older children sat like wax figures, completely silent and completely still. Adults sat erect, most with melancholy expressions resting upon their faces.

Caylee was an important member of their community. Everyone knew who she was. She was a local celebrity. Unfortunately, she was famous because of her disease. The disease that succumbed her life on June 6, 2008. She went into a coma on the fourth of June and never opened her eyes again.

The priest cleared his throat. Signifying he was about to start. He began his speech, 'Caylee was almost ten years old. She was a brilliant student with a bright future. She enjoyed photography and writing in her journal. She aspired to be a student at the Savannah School of Fine Arts. Her dreams were cut short by her brain tumor. Caylee had Anaplastic Astrocytoma. She tried to fight her disease with a vengeance, but her fight failed. '

'So today we are gathered here in the presence of God to honor Caylee's life. Her family and friends have prepared short eulogies to tell you more about her. I will turn it over to them now. '

People shifted in their seats. Becoming more comfortable and bracing themselves for tears. A small girl crawled up on the stage and took a seat behind the podium. She was obviously nervous. She faked a smile towards her audience and began to tell her story.

Chapter Two'
May 10, 2008

Miranda came over to play today. We haven't seen each other in over a month. She cried when she saw that I did not have any hair. She grabbed my hand and smiled as she handed me a present. The gift bag was adorable. It was hot pink with lime green polka dots. I just stared at the bag for a moment before I looked inside.

Inside was a wig! I couldn't believe my eyes! It looked like Hannah Montana's. Miranda helped me put it on. She fixed it to make it look beautiful. This made me feel special. It was just like old times again. She put makeup on me and dressed me in a cute little outfit. I helped her do her makeup and hair. She told me we were going to put on a fashion show like we used to do before I got sick.

She held my hand and helped me walk down the stairs to show my mom. My mom grinned from ear to ear at the site of me having hair again. I saw her begin to tear up. When I began losing my hair, my mom was more upset than I was. She tried everything she could to help my hair stay in. The chemo eventually won and my hair was gone.

I am going to wear that wig everyday from now on. It makes me feel like a girl again. I think it puts the sparkle back in my eyes. God brought Miranda to me for a reason, and I thank him for her everyday! She will always be my Best Friend Forever.

'My name is Miranda Jones. I am Caylee's best friend. We grew up next door to each other. We would play every afternoon. We did all sorts of things together. Our favorite thing to do was play dress up. I would bring my clothes to her house or she would bring hers to mine. We would trade clothes and then do each others makeup and hair. We had a blast together.'

'I remember one summer, we made a water park in my backyard. We had sprinklers, Slip 'N Slides, and obstacle courses. We ran through it all afternoon. Afterwards, we went inside and fell asleep on the couch. We slept straight through dinner. That was the best day of our friendship.'

'We could not stand to be away from each other. If we weren't at our own houses, we were at the others. We were inseparable. I loved Caylee as if she were my own sister. I don't know what I am going to do without her. She gave me one gift before she died. One gift that I will forever cherish. '

'She gave me hope, faith, and strength. She gave me hope that God would take care of us and everything would be all right. She gave me faith in God. She taught me to trust him, always. Last, she gave me strength. Strength to carry on. Strength to know that death wasn't the end. Strength, to overcome the fear or death.'

Chapter three'
April 30, 2008

Hannah is the best sister ever. She has stood by me through everything. She is amazing. She knew how much I really wanted to go to the movies. I haven't been in such a long time. I missed the atmosphere, the smell of popcorn, and being with my friends. So she decided to bring the movies to me. While I was sleeping, she rented a popcorn machine and a home theatre set. She set them up in our basement and invited all our friends over. She came in and woke me up to surprise me. She took me downstairs and was I surprised! We watched all my favorite movies and ate twice our weight in popcorn. After everyone left, my sister and I had a sleepover. We stayed up talking until three in the morning. When we were about to fall asleep I looked over at her and told her that I was going to miss these times we had together. She started crying and told me not to talk like that. She said that I had to stop thinking so negatively. I replied by simply saying, ' Hannah, I know you are going to miss me. It is going to be hard, but you will get through this. Trust me. I have been through so much in these last few years. I have seen how strong you are, I know you will be fine.' She looked at me with sad eyes and said, 'You will never know how much I love you.' I smiled with agreement. But, inside I already knew how much she loved me. A sister always knows.

I enjoy talking to my sister. It is the only time I really get to open up. I can tell her anything, and she won't say a word to anybody. She is the only person in this world that I really, truly trust. I am really going to miss our midnight conversations. I know she is going to miss them more though. I just hope she never forgets them. I know I never will.

'My name is Hannah Johnston, I am fifteen years old. I was Caylee's big sister. This is what I want to tell you about our relationship and how she affected my life.'

'I always thought that being the older sister meant teaching your little sister new things. After I found out that Caylee was sick, that all changed. I found myself learning new things from her everyday. She taught me how to see past what is on the outside and focus on what is on the inside. She showed me how to close my eyes and listen to the sounds of nature and how to paint a picture from that in my mind. She also taught me that it is ok to be afraid. 'Fear only makes you stronger,' she once said to me. After watching her fight for so long, I knew this must be true. In her last days was when she taught me the most. These teachings will forever be etched into my mind. '

'As I watched her lie in that bed, soaking up her last hours on Earth, I saw the comfort in her eyes. She had spent enough years on this Earth to realize that the simplest things in life are what counts the most. This is another lesson I learned from her. She had found God and trusted him with her life. She knew that with God, anything was possible. This was the last and best lesson she taught me.'

'I am now carrying on her ways by letting God lead my life. I used to try and control every aspect of my life, but now I have put it all into God's hands. I know he will guide me to the place where I belong. Just like he did with my sister Caylee. '

Chapter four'
April 6, 2008

I caught my mom crying again today. She is always crying because I am sick. I don't like it. It makes me even more upset. I wish she could understand and see things through my eyes. I am happy with the length of time I have been able to spend here on earth. She thinks that I am too young to die. I quote Billy Joel and sing, 'Only the good die young!' This always makes her smile a little bit.

I am tired of her blaming herself. She thinks she caused my disease because of what happened with Hannah. She has told me the story a million times. She calls me her miracle baby. But then she asks, if I were her miracle baby, then why am I dying? She believes that her uterus was a hostile environment for a baby and that some how led to my brain tumor. I told my doctors to reassure her, to tell her it couldn't be her fault. They have told her this a number of times, but she still has trouble believing it.

I love my mom so much. I hope that she sees this. I hope she can see that I do not blame her. I know it isn't her fault. It is nobody's fault. God made me sick to raise awareness. He is using me as his messenger. He brought me here to teach a lesson. I hope that have I fulfilled my mission and changed something for the better. I think he might have brought me here to help my mom. She needed some guidance, after her problems with her pregnancies, and I allowed that to happen. I just hope and pray that after I am gone, she can carry on and follow that path that God and myself have put her on. I know she can do this if she continues to have faith in God, and faith in me.

'My name is Nadia Johnston. I was Caylee's mom. It is hard for me to talk about her. I do not know how I am going to move on from this tragedy. But, I know that somehow God will lead me through this. Caylee was my miracle child. I remember the day I found out I was pregnant with her. It was one of the greatest days of my life.'

' When I became pregnant with Hannah, my first daughter, I was very excited, as most first time mothers are, but during the third trimester, that changed. I had a severe case of pre-eclampsia and wasn't expected to make it to term, by the grace of God, I made it to thirty-two weeks. After she was born the doctors advised me that I shouldn't get pregnant again, it would be too much of a risk for myself and the baby. My emotions were in chaos. I was rejoicing over the birth of my daughter and depressed over the idea of not having another child. '

'My doctor begged me to have a hysterectomy, to prevent pregnancy, but at the age of twenty-three I felt too young to have one. So against my doctor's will, I did not have the surgery. I still wanted to have more kids, so we tried again and again. I ended up having multiple miscarriages. Every time, I was left devastated. After years of heartbreak, we conceived Caylee. '

'When I first found out I was pregnant, I didn't get my hopes up. I had been hurt too many times before. Not until after the second trimester came around did it really set in. I was actually going to have this baby. I felt as if I had passed the point of no return. I just kept my faith in God, and put it all into his hands. He granted my prayers and allowed me to have an easy pregnancy without any complications and an easy birth. On June 27, Caylee was born. A healthy baby of seven pounds and 20 inches. '

'When we found out Caylee had AA, I blamed myself. I thought it had something to do with me. The doctors had advised me against having another baby, but I didn't listen. Had I caused this horrible thing to happen to my daughter? Caylee's doctors reassured me that it was nothing I did. They don't know the cause though, which makes me wonder if I really did do it. '

' I sometimes still feel like it was my fault though. If I had only listened to the doctors, maybe Caylee wouldn't have had to suffer. I hope she can find it in her heart to forgive me.'

Chapter Five '

April 22, 2008

I had another treatment today. They aren't helping. I am still very sick. The doctor's try to hide the fact that I am dying, but I know. I can see it in their eyes. I have been battling this tumor for almost three years. Nothing seems to help. My body hurts all the time. I can barely lift my camera to take a picture. The chemo makes me really weak and extremely sick to my stomach. All I can do is sleep and pray. My dad is taking me to Tybee Island tomorrow. He says it helps me to relax and heal. I like to watch the sunset. It reminds me that I have lived another glorious day.

When we are there I mostly sleep. My dad sits in a chair next to my bed. He stays awake all night watching over me. Sometimes I wake up and hear him crying. I try to tell him that everything is going to be all right. God will take care of us. But, he still doesn't understand. He doesn't understand how I am not afraid to die. I have been blessed by God. He has given me almost ten years on this earth. Ten years to see the beauty of nature. Ten years to see all the wonders he has created.

The last time I was able to make it to church, they read a scripture to the congregation. It was from Psalm 23. It said, 'Even though I walk through the valley of the shadow of death, I fear no evil for you are with me. Your rod and your staff, they comfort me'' ''Surely your goodness and love will follow me all the days of my life and I will dwell in the house of the Lord forever.' This scripture has carried me through my days of pain, because I know everything is going to be all right through God.

'I am Jason Johnston, Caylee's father. Caylee has made a major impact on my life. An imprint that will never be removed. She was my second baby girl, and I will never forget her. Especially the time we spent at Tybee Island. '

' When Caylee would get really sick, I would carry her weak body to the van and would lay her in the backseat. I would leave Nadia home with Hannah and take Caylee to Tybee Island. I rented a cottage on the beach for her there. It had an amazing view of the ocean. I would place her on the bed in the sunroom. I would sit in a chair beside her. She would sleep there. Sleep to the tranquil sounds of the tide rolling in and out. '

'When she would wake up she would watch the gulls dance across the horizon. She once told me that she wished she was a bird and could fly where ever she wanted and see the world. I knew she meant before she died. She knew that she was going to die. Her bravery was so marvelously powerful. It moved me in such a way that I knew my baby girl would be all right, no matter what lie ahead. My angel, she was and eternally will be. And forever will she be able to fly. Fly and see the world. '


After the last person spoke about Caylee, everyone mustered up their strength and climbed into their vehicles and started their journey towards the grave site. They buried Caylee under her favorite tree on her grandfather's farmland. Caylee wanted to be buried under this tree. She used to climb up in it and read her favorite book when she was little. She would make picnic lunches and set them up in the shade that the tree provided. When she first learned to write, she carved her name into the strong trunk of that tree. It was her tree, she claimed it for her own. It felt only right to bury her in her favorite place.

Caylee was a lot like that tree. The sturdy trunk was like her mind. She was strong minded, and even through her toughest times, she never lost that. She always thought everything through thoroughly before making a decision or reacting.

The branches were like her arms. They reached out and touched anything and anyone who came near. By simply brushing someone's shoulder, she could change their life. Also those branches signify her reaching out for support to help her through her disease.

The tree's leaves were like her hair. When times were tough, she lost her hair. When times get tough for the tree, it loses its leaves.

A year after her death the Caylee's Cause foundation was set up to help children with AA and their families to pay for medical expenses and everyday necessities. Caylee would have been proud to see this happen if she were alive. Everyone knows that she is looking down from heaven and smiling at the things being done to help. To help the world she had to leave. The world she looked upon as her canvas to paint. The world she always wanted to see.

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