We are very sad to let you all know that our dear, sweet Natalie passed away this morning, August 14, 2010, after her amazing and valiant struggle with Ewings Sarcoma. We love her and will miss her deeply. Please know how thankful we are for dear friends, those of you we know and those of you we don't know, who have helped to sustain Natalie in her last wish. We are so blessed to have had Natalie touch our lives.
Thanks to all!
Tuesday, July 6, 2010
My name is Natalie Jolley. I am 22 years old and I have Ewings Sarcoma, a rare junvenile bone cancer. This is my story.
I was like most little girls who loved to dress up in fancy dresses and twirl and twirl. I loved running and jumping and tumbling. My favorite place to be was upside down on any monkey bar or swing set.
I like sports. I loved playing soccer, softball, and basketball, but in my heart, I really wanted to be a cheerleader. Trying out for cheerleader was not easy for me. I had never been trained in tumbling and so I had to start from scratch. I tried out for my sophmore year and didn't make it. I worked harder and tried out for my junior year and I didn't make it. I decided that if I was going to be a cheerleader I was going to have to pick myself up and work even harder to get my "full", a tumbling stunt that not everyone does. I worked and worked and tried out for my senior year and this time I MADE IT!!!
Up until then, that had been the biggest fight of my life. Looking back on it, it just might have been the best training I could get for the fight that was just around the corner in my future. Looking back, I learned that I am strong! I learned that I don't quit and that I can do anything I set my mind to. What I know now is, my struggles, disappointments and triumphs with cheerleading prepared me for the fight of my life and for my life.
After high school I was so excited to go to college. Because of money, I only went parttime my first semester and not at all my second semester. I worked and saved my money and was so excited to start full time fall semester 2007. I had been having severe pain in my back and sides for three months and no one could figure out what was going on. I thought I had pulled a muscle in my back while tumbling but the pain got worse and worse. I couldnt sleep. I would pace all night long and if I did get any sleep it was kneeling on the sofa in my family room and hanging over the back. I was getting about 2 hours a night. Four days into fall semester, my legs went numb and I was having a hard time putting one foot in front of the other. My mom took me to the emergency room on the night of August 30, 2007. Because the feeling was gone in my feet they did several tests and an MRI and found a tumor in my back at T- 8,9,& 10, next to my left scapula. They gave me pain meds (alot of them) and for the first time in months, I was able to sleep. By the afternoon the next day, I was in surgery, relieving the pressure on my spinal cord. It was Labor Day weekend and so we had a long wait for the official diagnosis but the doctors all knew that it was a sarcoma and a very serious cancer.
Needless to say, my family and I were in shock, sad and scared. The diagnosis came back as Ewings Sarcoma and because it is a juvenile cancer we went to Primary Children's Medical Center for treatment. What a blessing that turned out to be. I started in-patient chemo treatments on September 10. I had 14 total in-patient treatments that lasted anywhere from three days to five days with a total of 5 different kinds of chemos. I was also looking at radiation on my back and my pelvis.
Chemo made me very sick. I lost my hair and I had dozens and dozens of transfusions of whole blood and platelets-sometimes 3-4 times a week. Because my white blood cells were destroyed by the chemo, I had to stay out of the public and I had shots every night to help my body rebuild the white cells and my immune system. As soon as my counts were up I would start the whole process again.
About half way through chemo, I started radiation to my back. I had a total of 25 radiation treatments at that time.
I was so excited to be finished with chemo treatments in October of 2008. I was looking at radiation on my pelvis to be finished about the first of the new year. I enrolled for spring semester at Utah State, had a new place to live and was looking forward to moving on with my life.
I started having headaches around Christmas but didn't think too much about it. I finished up my radiation after another 22 treatments and had mentioned the headaches to my doctor at Huntsman. She said to keep an eye on them but to enjoy school. I went to the first two days of school and the headaches got so bad that I was vomiting up everything. The doctors wanted to look at my head. They found a tumor in my skull pressing into my brain. Because of the seriousness of this tumor, I had to once again drop out of school and go back into radiation.
I had 20 treatments to my head and once again lost my hair. Not long after that, they found a spot on my collar bone and radiated there. The headaches started again and this time the doctors said they probably couldn't do anything more to help me. But we were not giving up. The stereotactic doctors thought they could get the tumor using the stereotactic machine. I was radiated 5 more time to my head and moved forward.
Everything seemed ok. I enrolled again at Utah State for the third time for part time classes fall of 2009. I had such a great semester. It was hard but good. It was my first real experience living away from home. I registered for spring 2010 for fulltime classes and was ready to go.
The weekend of Presidents day in February of this year, I was riding home from seeing my brother and his family in Colorado. My leg was killing me and when I got out of the car, I couldn't walk on it. Yep, that's right, more cancer and more radiation to my femur this time. I was able to stay in school this time so I would go to class, drive to Ogden to meet my mom, drive with her to Huntsman in Salt Lake, have radiation, ride back to Ogden, and drive back to Logan. I did that every day for 10 days but it was ok. I was so glad I could stay in school.
In the early morning hours of February 22, less than two weeks later, my back and chest started hurting severely and my feet went numb again. I called my mom and she drove to get me in the middle of the night. We spent the rest of the night at my house and then headed to Primary Children's Medical Center. By 2 o'clock in the afternoon, I was paralyzed from the chest down. We knew that meant tumor on my spine but we had to wait for an MRI machine to find out where it was. We found it at T-3,4& 5. I was back in surgery that evening to relieve the pressure to my spine. I went back into radiation to shrink the tumor in my back. This time we were really praying that I would get the use of my legs back. I spent 10 days, including my
22nd birthday, in the hospital hoping to walk again and amazingly, on day 10 I was able to walk (or ride) out of the hospital. I had physical therapy and occupational therapy to help me learn how to get around with a walker, crutches and wheelchair. Soon, I was walking with minimal help. Talk about relieved but once again, sad because I had to drop out of school for the third time.
I was pushing forward, trying to improve my strength, thinking that maybe I could at least go back and live the last month that I had paid for in my apartment in Logan. Two weeks after I got home, the headaches started again. Tests showed that the tumor was again growing in the same place in my skull. This time there was nothing to be done. I was told that I am terminal and that I should live my life the best that I can and enjoy the time I have left.
I struggle every day to make my legs do what I want them to. It's amazing how much my ability to run, jump and tumble was taken for granted. I just did it. Now, everyday takes effort. I am blessed. I have a family and friends who love me and bring happiness to my life every day. I have learned many lessons through this journey but the most important lesson is that family and friends are everything. That we should do everything to lift one another. Thanks to all of you who stand behind me.
And so I move forward! I wouldn't have chosen this journey but I have learned many things along the way and soon I will move on to a wonderful place where all the struggles of my body will be gone and I will once again be able to move and run and jump. My hair will be restored and I will not hurt any more. And once again, I will be victorious in my fight. I will be released from this mortal body and I will live again.