(Written March 2013)
When I was sixteen, my entire life turned upside down. I was a dedicated high school student, and was captain of the school soccer team and dance team. Up until my junior year, I was a relatively healthy person. If I got sick or injured, my parents would tell me to walk it off. I hardly ever went to the doctor.
In the year leading up to this life-changing event, my church youth group leaders were giving the students a chance to share their testimonies. By the time it became my turn I felt like I had nothing to say. I had heard the other stories and knew that what I had gone through in my life couldn’t measure up to what some of my friends had gone through. I grew up in church. I never had that “aha” moment to change my filthy life and become a follower of Jesus. The biggest things I had endured by that age were watching my parents get divorced, and getting the crap beat out of me by my older brother. So that was what I had shared with everyone, and hoped that at least one person would be touched by my story and could relate.
I always wanted more out of life even at that young age. I had always felt like I was going to stand out one day, and that God had huge plans for me. And I was right. I just didn’t realize how massive these plans were. I was diagnosed with a benign brain tumor in October 2005. It was located behind my right ear, and was wrapped around the main nerves and arteries. It was causing paralysis to my right eye, when I stuck my tongue out it pointed down to the right side, and I was hearing a swishing sound in my ear every time my heart beat, almost like waves crashing.
Surgery to remove the tumor was scheduled for April 20, 2006. I had to get a lot of things in order since I was going to be recovering for four weeks following the operation. Everything was falling into place. My teachers were all very understanding, and gave me all of my homework ahead of time. My rocky relationship with my mom was calming down, and my brother had given me a sincere apology for his actions. Even though I was in pain, I got to dance in my school’s biggest show of the year. And the week before my surgery my dad, my best friend, and I went to Maui. It was one of the greatest trips I had ever been on. We rode horses through the jungle and along cliffs overlooking the ocean, we rode ATV’s through the mud and hilly part of the island, we saw a magic show where my dad got picked to be one of the volunteers, we went swimming and snorkeling along the shore, and we flew in a helicopter around the island overlooking waterfalls and the center of the volcano. Everything was perfect. Actually, everything was too perfect.
After I dropped off all the things I would need while recovering to my dad’s house, I drove over to see my best friend and her mom. We sat around the kitchen table talking for a few hours. Sometimes we didn’t talk at all because no words were needed. And then I told them. “I think I am going to die.” I explained how I thought everything seemed so perfect, and that maybe the reason it was all flowing so smoothly was because I was never going to be able to do those things again. It was like I was doing everything for the last time. The three of us grabbed hands and began to cry.
The brain surgery lasted fourteen hours, and my friends and family sat patiently in the waiting room. Immediately following the operation I was sent to radiology for a cautionary full body scan. To everyone’s surprise, the scan showed over thirty other tumors down my spine, a couple in my ribs, and a large one bulging out of my left femur. My once benign brain tumor had turned into a rare metastatic disease. There were only eleven other cases ever recorded for this cancer, and I was now the only one still alive with it.
Due to the dangerous location of the brain tumor, some of the nerves were compromised. I am now deaf in my right ear, my right vocal cord is paralyzed, and the right side of my face and mouth have little feeling. There is still a small piece of the tumor in my brain that the surgeons could not touch because it was around the main artery. I would have bled out if they removed it. Since one of my vocal cords is paralyzed, I had to relearn how to swallow. I didn’t eat anything orally for about three months. A feeding tube was put into my stomach the day after the brain surgery, and that is where I got my nutrients. I lost forty pounds in one month. I know it sounds strange saying that I had to relearn how to swallow because it’s something we all do thousands of times a day without even knowing, but I couldn’t even swallow my own spit. I had a suction device with me for five months for that reason alone. It was like that straw you suck on at the dentist office. It was really gross.
Many surgeries followed like a vocal implant to compensate for the right side, spinal rods to stabilize my spine, and a metal rod down my femur to help fuse the bone back together from where they cut out the tumor. I also had to relearn how to walk again because I had surgery on my leg, and my equilibrium was off from having my brain cut into.
I lived in excruciating pain everyday, but once it was somewhat managed, I was sent off to Children’s Hospital in Los Angeles for further care. I cannot even begin to explain how nauseous I was. I threw up every single day, at least 10 times a day, for the first six months post brain surgery. When I would go into have radiation I always had my barf bucket on my lap with my head hovering over it. During one of those radiation appointments was the first time I realized I had cancer. I was young at the time and my parents took care of everything for me. I knew I had tumors everywhere, but I didn’t realize that meant I had cancer. Nobody ever used that word around me. It was always words like, tumor, malignant, metastatic, and carcinogenic. But during one appointment I overheard my mom and her best friend talking about how someone nominated me for the Make-A-Wish Foundation. I was puzzled because that was the first I was hearing of this news, so I turned and asked, “Isn’t that just for kids with cancer?” Their eyes started watering, and that’s when I knew. I had cancer.
Many different kinds of chemotherapies and treatments were forced into my body. Since I was the only person in the world with this kind of cancer, my doctors didn’t know how to treat me. When one treatment wasn’t working, we would move on to the next one, and so on. I felt like a ginny pig. After two years of torture, my tumors were finally stable. They weren’t growing or shrinking, and at that point that was the best news we had heard. My oncologist told my family and I that I could continue living that way as long as the tumors stayed dormant. So I stopped chemotherapy and tried to get back to the life I had before this all happened. That was much easier said than done.
I had lost my identity. If someone was to have asked me a few months before I was diagnosed to describe myself I would have said, a Christian, a dancer, a soccer player, athletic, outgoing, a leader, etc. But I couldn’t say those things anymore. I had metal throughout my whole body; there was no way I was athletic or outgoing anymore. And with all the turmoil I was put through, I wasn’t so sure I even believed in God anymore because God wouldn’t have put me through the kind of pain and loss and depression I was living with. He took things from my life that I loved and abandoned me when I needed Him most.
It will be seven years since I was diagnosed on the 20th. I relapsed a few times, I have had 18 surgeries since then, and I’m still living with cancer today. I wouldn’t change the last seven years for anything. I was able to go back to Hawaii two years ago. I got back on a horse and rode an ATV. It wasn’t that I was going to die, and would never be able to do those things again. It was that I wasn’t going to be able to do them for a long time, and it wouldn’t be with the healthy body I had before. It was painful and extremely hard, but I got back up again. I’ve learned so much about myself, and I’m nowhere near finished. God gave me cancer for a reason. Part of that reason was so I could reach out to other young girls going through similar challenges, and to share my story with the world. And the rest of that reason I’m still oblivious to. Science said I should have died a long time about, but somehow I’m still alive. So I try not to take life for granted, and I work hard to better myself everyday. This journey isn’t over for me. It’s still being written…
When I was sixteen, my entire life turned upside down. I was a dedicated high school student, and was captain of the school soccer team and dance team. Up until my junior year, I was a relatively healthy person. If I got sick or injured, my parents would tell me to walk it off. I hardly ever went to the doctor.
In the year leading up to this life-changing event, my church youth group leaders were giving the students a chance to share their testimonies. By the time it became my turn I felt like I had nothing to say. I had heard the other stories and knew that what I had gone through in my life couldn’t measure up to what some of my friends had gone through. I grew up in church. I never had that “aha” moment to change my filthy life and become a follower of Jesus. The biggest things I had endured by that age were watching my parents get divorced, and getting the crap beat out of me by my older brother. So that was what I had shared with everyone, and hoped that at least one person would be touched by my story and could relate.
I always wanted more out of life even at that young age. I had always felt like I was going to stand out one day, and that God had huge plans for me. And I was right. I just didn’t realize how massive these plans were. I was diagnosed with a benign brain tumor in October 2005. It was located behind my right ear, and was wrapped around the main nerves and arteries. It was causing paralysis to my right eye, when I stuck my tongue out it pointed down to the right side, and I was hearing a swishing sound in my ear every time my heart beat, almost like waves crashing.
Surgery to remove the tumor was scheduled for April 20, 2006. I had to get a lot of things in order since I was going to be recovering for four weeks following the operation. Everything was falling into place. My teachers were all very understanding, and gave me all of my homework ahead of time. My rocky relationship with my mom was calming down, and my brother had given me a sincere apology for his actions. Even though I was in pain, I got to dance in my school’s biggest show of the year. And the week before my surgery my dad, my best friend, and I went to Maui. It was one of the greatest trips I had ever been on. We rode horses through the jungle and along cliffs overlooking the ocean, we rode ATV’s through the mud and hilly part of the island, we saw a magic show where my dad got picked to be one of the volunteers, we went swimming and snorkeling along the shore, and we flew in a helicopter around the island overlooking waterfalls and the center of the volcano. Everything was perfect. Actually, everything was too perfect.
After I dropped off all the things I would need while recovering to my dad’s house, I drove over to see my best friend and her mom. We sat around the kitchen table talking for a few hours. Sometimes we didn’t talk at all because no words were needed. And then I told them. “I think I am going to die.” I explained how I thought everything seemed so perfect, and that maybe the reason it was all flowing so smoothly was because I was never going to be able to do those things again. It was like I was doing everything for the last time. The three of us grabbed hands and began to cry.
The brain surgery lasted fourteen hours, and my friends and family sat patiently in the waiting room. Immediately following the operation I was sent to radiology for a cautionary full body scan. To everyone’s surprise, the scan showed over thirty other tumors down my spine, a couple in my ribs, and a large one bulging out of my left femur. My once benign brain tumor had turned into a rare metastatic disease. There were only eleven other cases ever recorded for this cancer, and I was now the only one still alive with it.
Due to the dangerous location of the brain tumor, some of the nerves were compromised. I am now deaf in my right ear, my right vocal cord is paralyzed, and the right side of my face and mouth have little feeling. There is still a small piece of the tumor in my brain that the surgeons could not touch because it was around the main artery. I would have bled out if they removed it. Since one of my vocal cords is paralyzed, I had to relearn how to swallow. I didn’t eat anything orally for about three months. A feeding tube was put into my stomach the day after the brain surgery, and that is where I got my nutrients. I lost forty pounds in one month. I know it sounds strange saying that I had to relearn how to swallow because it’s something we all do thousands of times a day without even knowing, but I couldn’t even swallow my own spit. I had a suction device with me for five months for that reason alone. It was like that straw you suck on at the dentist office. It was really gross.
Many surgeries followed like a vocal implant to compensate for the right side, spinal rods to stabilize my spine, and a metal rod down my femur to help fuse the bone back together from where they cut out the tumor. I also had to relearn how to walk again because I had surgery on my leg, and my equilibrium was off from having my brain cut into.
I lived in excruciating pain everyday, but once it was somewhat managed, I was sent off to Children’s Hospital in Los Angeles for further care. I cannot even begin to explain how nauseous I was. I threw up every single day, at least 10 times a day, for the first six months post brain surgery. When I would go into have radiation I always had my barf bucket on my lap with my head hovering over it. During one of those radiation appointments was the first time I realized I had cancer. I was young at the time and my parents took care of everything for me. I knew I had tumors everywhere, but I didn’t realize that meant I had cancer. Nobody ever used that word around me. It was always words like, tumor, malignant, metastatic, and carcinogenic. But during one appointment I overheard my mom and her best friend talking about how someone nominated me for the Make-A-Wish Foundation. I was puzzled because that was the first I was hearing of this news, so I turned and asked, “Isn’t that just for kids with cancer?” Their eyes started watering, and that’s when I knew. I had cancer.
Many different kinds of chemotherapies and treatments were forced into my body. Since I was the only person in the world with this kind of cancer, my doctors didn’t know how to treat me. When one treatment wasn’t working, we would move on to the next one, and so on. I felt like a ginny pig. After two years of torture, my tumors were finally stable. They weren’t growing or shrinking, and at that point that was the best news we had heard. My oncologist told my family and I that I could continue living that way as long as the tumors stayed dormant. So I stopped chemotherapy and tried to get back to the life I had before this all happened. That was much easier said than done.
I had lost my identity. If someone was to have asked me a few months before I was diagnosed to describe myself I would have said, a Christian, a dancer, a soccer player, athletic, outgoing, a leader, etc. But I couldn’t say those things anymore. I had metal throughout my whole body; there was no way I was athletic or outgoing anymore. And with all the turmoil I was put through, I wasn’t so sure I even believed in God anymore because God wouldn’t have put me through the kind of pain and loss and depression I was living with. He took things from my life that I loved and abandoned me when I needed Him most.
It will be seven years since I was diagnosed on the 20th. I relapsed a few times, I have had 18 surgeries since then, and I’m still living with cancer today. I wouldn’t change the last seven years for anything. I was able to go back to Hawaii two years ago. I got back on a horse and rode an ATV. It wasn’t that I was going to die, and would never be able to do those things again. It was that I wasn’t going to be able to do them for a long time, and it wouldn’t be with the healthy body I had before. It was painful and extremely hard, but I got back up again. I’ve learned so much about myself, and I’m nowhere near finished. God gave me cancer for a reason. Part of that reason was so I could reach out to other young girls going through similar challenges, and to share my story with the world. And the rest of that reason I’m still oblivious to. Science said I should have died a long time about, but somehow I’m still alive. So I try not to take life for granted, and I work hard to better myself everyday. This journey isn’t over for me. It’s still being written…
Some stuff I have written over the years...Check them out. :)