My story began at a early age. I had a lot of help from my mom telling me how it all started back in 1990. I was a miserable baby. Mom keep telling the doctors that something wasn't right with me, but they couldn't figure out what. They thought it was mom's diet since I was breast fed. But then they noticed I had a lazy eye, so they put patches on my eye for over 6 months until they finally decided it would be better to operate. The first time they put me under to fix my eye, my oxygen levels dropped and they didn't complete the surgery. They said I must be getting sick. A few weeks went by and they did the surgery. Mom said it worked well and the doctor was pleased. Then my pediatrician noticed I wasn't growing too well but he wasn't too concerned. Then I caught the flu and life changed suddenly. He wanted to admit me to the hospital because I wouldn't nurse or eat. He said it would be for just one day to keep me from becoming dehydrated. They started the IV. They were not sure how it happened, but my electrolytes dropped and I had a seizure. They scheduled a Cat Scan and they found my first tumor.

All of a sudden things started to make sense as to why I was so miserable as an infant. I still can't imagine how my mom and dad felt at the time when I was just 17 months old. Mom says it was like someone was reaching deep inside twisting her heart until it almost broke, but she still had the courage to go on. We lived in a small town in SC and had to go to a different town, so they decided it would be best to go back to our home town. Mom said they strapped her in an ambulance bed and she had to hold me on the 4 hour trip to Charlotte. By the time we arrived, I had emptied out drawers near me and the paramedic was on his last nerve. I was admitted to the hospital until the neurosurgeon associated with Carolina Medical Center could see me. In Charlotte, my parents would have support from family, and my older sister would have someone to care for her while mom and dad were with me.

We met Dr. Heifner, and he explained that I had a Crainiopharyngioma behind my eyes on the pituitary gland area and it needed to be removed. He explained that they would go in through the right side of the top of my head and lift my brain to get to the tumor. It needed to be done in a few weeks time, either by Christmas Eve or the first of the year. But first I had to see an endocrinologist. They checked my hormone levels and had to start me on Cortef for my adrenal glands. No wonder I had no energy. I had seen pictures my parents took of the Christmas before and I seemed to be a happy kid, riding a small bus, playing with blocks, laughing at my sister Camille. What amazed everyone was how much energy I suddenly had, and I finally didn't want to be held 24/7 or nurse.

The surgery was the start of many. They removed my tumor off the stalk of my pituitary gland, and due to swelling, I lost most of my sight in my right eye due to optic nerve damage from the tumor pressing on it. I was in ICU for 9 days until they got all my new hormone medicines figured out. Mom also learned to give me shots. I would be taking hormone replacements for life due to me now having panhypopituarism. Due to the tumor on the stalk of my pituitary gland, the gland couldn't send or receive messages to or from the body. I now know why I hate clowns. They always come to visit you in hospitals and they really did scare me with all the makeup on. It might be why I never wanted to go to see a circus and never have.

When I started first grade, my mom came also. The school wanted my mom to be there and offered her a job as a Para Pro, assisting teachers and making copies. She loved helping other kids and teachers, and I was able to go get my medicines when I needed them. It helped me go to school more often than normally. Spring came and another MRI was due to check on my pituitary gland area. They found two more tumors, and I had to have surgery between 1-2 grade. My Mom had a birthday party with all the kids from my class. It sure was a blast. I still remember the cake with cars all over it. The surgery went well, and I didn't have to have radiation. The tumors all had been benign. Things were getting back to normal, but I still wasn't growing. Going into second grade at only 25 inches tall wasn't easy. The doctor finally started me on Growth Hormone and I took off around 5-6 inches a year. The worst was daily shots at night. They really didn't hurt but I did sometimes get sore from them. 

We moved to Georgia then, and I had to get all new doctors. It wasn't easy on my parents, but at least dad had a good job again. I had to have an MRI every year from now on out. After 5 years or so they found more tumors in the same place behind my eyes. They stopped Growth Hormone and did the watch and wait game with me. Here I was a teen and having all these problems. It just didn't seem fair at all. Even playing bass in the Jazz Band was tough, especially when we went to do performances at different locations. We had to pack up my medications, etc. While other kids were out playing sports, I was in the hospital or doctors' offices for check ups, shots, and lab tests. Finally, at the end of 7th grade, they did surgery again at Scottish Rite. Dr. Reisner removed 4 or 5 tumors this time. Within a short time, another came up when they did my MRI recheck a few weeks later, when it was decided that radiation was appropriate.

My summer was horrible! I had 30 days of radiation, and the only good thing was they made the coolest mask to hold my head in position during radiation. I still have my mask hanging on my bedroom wall. It looks so cool. Our mornings started at 4 am. We drove down to Piedmont Hospital two hours away so I could have radiation. Mom said she would shave her head for me or I could let my hair grow out after all the radiation was completed. I did lose half of my hair. I have been letting my hair grow down my back since then.

It goes so well with me playing bass guitar since I was 8 years old. After many lessons, the teachers can't really teach me any more. Now it's up to me to play and write what I enjoy, like Dream Theater, Kamelot, Opeth, and many more bands, especially progressive metal. I started 8th grade, and the kids were great. They met me and carried my bass and books. I just didn't have any energy for a while after radiation. The teachers really worked with us, and then we raised money for the Make a Wish program, not knowing it was for me and other kids in our state. I got a cool amp called a Mesa Boogie and a Hartke 115. I could blow the windows out but don't because I would be in trouble.

Things got back to normal, and I went to get an MRI every year, to the endocrinologist every 3 months, and to Dr. J every few weeks. He is one cool doctor. When I was in the 11th grade, they found another tumor. It sucked big time. I got so down about it that I didn't even want to learn to drive, but mom said there was no way she would drive me to college and that I had to go practice with dad till he felt mom could handle it. I'm practicing as much as I really want to. Sometimes I still don't care but there's no way I will walk to college, and I don't want to live on campus, at least for the first year. Living on campus costs a lot, dad's job might not last, and we don't have health insurance. I was kicked off of Katie Beckett because they said I wasn't medically needy. We even wrote the governor and finally got a reply. We are all are just fed up with the system and how a lot of kids fall in the cracks and get overlooked. It might be why I've decided to go to college to work on becoming a pharmacist. I love Chemistry, and I live at hospitals or doctors' offices, so I might as well work where I need to be.

It's now winter 2008, and it's getting about time for an MRI check up again. I have to find out how my 9th tumor is doing. I dread going and wonder if this summer they will remove the tumor, and now with no insurance, who knows.  I will turn 18 in June, and then I really want to start college and be a normal kid and hopefully have no more tumors. I can live with taking medication to keep me alive. I just get tired of surgeries and staying in the hospital.

I go for an MRI at Scottish Rite in April to find out how much the tumor has grown.

I had my MRI today (April 9, 2008) and saw my neurosurgeon Dr. Reisner. As far as they can tell, my tumor is not growing about the same size as last year. I'll wait a year and go back for another one unless changes to my vision and major headaches develop..

I'd like to say thanks for all the messages, prayers, and words of encouragement. It means a lot to me to see that so many people care.

I went for a yearly MRI and it wasn't a good report. It looks like something is growing below my 9th tumor. I'll have another MRI in 3-4 months. It really made me mad, sad, and depressed. I was hoping the other one was gone. I feel great except for this setback. I did start a new game online called Portal that's awesome.