My biological father’s name was Cory. We call him “Daddy Cory,” though I never met him. My parents married in 1982. My sister was born in 1983. Fast forward to December 1984, my parents found out that Daddy Cory had NF2. He was 24. My Mom said it was a big shock to them both. NF is either genetically inherited (like me) or it is a spontaneous mutation (like Daddy Cory’s.) Over the next 2 1/2 years, another sister was born and Daddy Cory had eight brain surgeries (there was no radiation/chemo options at that time; even MRI’s were just beginning to be used). His recoveries did not stop him from being a Dad and hard worker! He was an Accountant and the company he worked for allowed him to work from home when needed. He and my Mom both trusted in the Lord through all this, whether good news or bad news at each appointment. He never lost faith and met Jesus, July 1987, soon after his eighth surgery, due to a brain hemorrhage . A few weeks after his funeral, my Mom found out she was pregnant with me.
The doctor told my Mom that I would have a 50% chance of genetically inheriting the NF2 disease. She had the option to abort me, but chose to keep me as she trusted God that He had special plans for my life. I know it was not only special plans for me, but also for my Mom and sisters. Daddy Cory and Mom had both graduated from the same college, one year before a special man named Mark–or “Mr. Mark” as my sisters called him. That special man is now my Dad. Their story: Mom had returned to campus that Fall of ’87 for the 5 year reunion and Mr. Mark was there that weekend as well. They crossed paths at the library where Mr. Mark said that he was sorry to hear the news about Daddy Cory’s death. They chatted for a few minutes and went their separate ways. Over that winter, they communicated by letters, nothing serious, just a good friendship. The night I was born, my Grandma brought in the mail to my Mom. There was a letter from Mr. Mark saying that he was excited to find out whether the baby was a boy or girl. That night, my Mom called him. Their love story goes from there…they married in the early summer of 1989. He adopted my older sisters and I, then my little sister was born three years later.
Fast forward my childhood years to junior high. In the fall of my 8th grade year, my hearing started to change and I failed a school hearing test. I knew hearing loss runs in the family, so no initial panic. My freshman year in high school, I ran cross-country and had great friends. My coach and parents noticed the way my ankles turned inward when I ran, but it did not make sense until an MRI was ordered in November. The day my parents found out the MRI results, I was at school. It was Monday, November 18, 2002. I was supposed to have flute lessons, but Mom told me on the way home that they got cancelled yet gave no reason why. My Dad was already home (which was also weird to see him home so early) and they asked if they could talk to me. I figured I was in some sort of trouble. They told me about the results–the big NF2 word scared me as I thought of Daddy Cory and my first thought was that I was going to die. After we prayed together, my two sisters came in and they heard the news. My oldest sister was in college. That Thanksgiving was both special and different. We had amazing support and prayers from our church, my friends and all the extended family. A month later, December 18th, I had surgery to remove a grape sized tumor that was squeezing my spinal cord flat. January was a month of getting back in school while healing. I used a pillow to support my back against the hard chairs and the pews at church. One Sunday, all of my youth group brought their pillows to church as a surprise–there we all sat in our second row pew with pillows behind our backs. Great memory!
February-March 2003, I started six weeks of radiation at the University of Denver hospital in Aurora. The journey did not start out as a great one. I did not want to have radiation. I did not want to be away from family, school and friends. Radiation hit me hard the first few weeks–extreme fatigue and a sick stomach. Radiation affects people in different ways and for me it was my sense of smell. I got sick every time we drove on Colfax Ave (which we drove often going from downtown Denver Children’s Hospital to the University Hospital). Once I started to feel better, my Mom and I embarked on adventures together visiting museums and attending our friend’s church on Wednesday evenings. My Mom made the time special and fun. I did my school work on my own. We would go home for the weekends; Monday morning before we would leave again, we would stop by school to drop off homework and get new assignments. My family sacrificed a lot during these times.
I had doctor appointments/MRI’s every six months to keep track of things, but I lived a somewhat normal life again until my junior year of high school. The tumor behind my thyroid was growing so I went back for another six weeks of radiation that spring of 2005. I got hearing aids that January, which made a huge difference in my communication with people around me. I graduated from high school in of May 2006 and started college that fall at Colorado Christian University.
CCU was an amazing experience! Besides lots of studying and long nights of writing papers in the Student Union, I enjoyed basketball games and other ministry opportunities. I grew most in my personal life and in my relationship with God. I went in as a freshman with many burdens and questions; I still asked God, “Why did this happen to me?” and “Why can’t I be normal like everyone else?” I was blessed with the most amazing roommate and unit girlfriends. The summer after my first year at CCU, I started to have numbness in my hands. Doctors were not giving any answers and I was frustrated. My hometown church had asked me to sign a song for a worship service before I left for my sophomore year. I was in a leadership conference that fall and was headed back a week early. The last Sunday I was home, the worship leader asked me to sign Casting Crown’s, “Praise You In This Storm.” I was not too keen on it, but I agreed. Toward the last chorus, I was in tears realizing that I was signing the song, but not living the life it described. I told God during that song that I would trust Him. Two days before I left for college, my dad told me that doctors had the results of my latest MRI scan. It showed a tumor growing IN the spine at the base of the cord right where the neck starts, which was most likely causing problems. I do not think that I would have reacted with such peace if it had not been for my moment with God during the song on Sunday.
Believe it or not, nothing medical happened my sophomore year besides a few weeks of steroid pills as a test to see if they would help. One of my favorite memories that year was during the first day of Intro to Business class. The professor had us fill out this “get to know you” questionnaire. It was easy until I got to one question, “If you could change one thing about yourself, what would it be?” I skipped the question and filled out the rest. People started turning in their papers and I sat there studying the question. It was like opening a can of worms and my mind was swarming thinking, WHAT KIND OF A QUESTION IS THIS?? I was not mad, just perplexed. I finally wrote, “Nothing.” For the first time in my life I finally found peace and acceptance of who I am, why I have the disease and my physical body.
Fall of 2008, doctors had me start a chemo pill called Tarceva. The biggest side effect would be a zit like rash and hair loss; within one day I started the rash and a few weeks later I started losing my hair. The night the rash hit, I looked in the mirror and said, “Wow, you look ugly” and went to bed so upset. God used my close roommates and one really close guy friend to help encourage me during that semester. To counteract the headaches and rash I had been experiencing, I was taking six Benadryl a day plus the chemo pill. I had 18 credit hours and my downtown ministry weekly meetings. I do not want this to sound boastful–but rather answered prayer. I have been surrounded by many prayer warriors; I know during that semester, the only reason why I got out of bed every morning is because God heard the prayers to give me strength.
By Thanksgiving, I was down to 102 pounds and basically starving as I could not keep any food on my stomach. Doctors had me stop the pill. After my last final that December, I had a mini surgery to place a medi-port in my upper chest to prepare me for chemotherapy by IV that spring. Off Tarceva, I started to eat better and the rash went away. My hair slowly came back too. The first day I went without a hat was a great memory. It was a Thursday. I had received many comments at school, but the best was from a kid that was in my group at Street Church (the downtown ministry.) These kids had amazing talents and for this one in particular, he could be an actor. Everything was very dramatic for him… he would do stunts and have the best facial expressions when telling stories. I could never get him to sit down for a whole meal. I had come out of the kitchen to meet the kids as they ran in. He came running over all excited and talking fast about something, then finally noticed I was not wearing a hat. His mouth dropped open and yelled out, “Hey! YOU HAVE HAIR!” Then ran off. Hilarious moment!
That spring of ’09, I had six sessions of the chemo Avastin. It is an IV based chemotherapy treatment. Things calmed down after this. I graduated in December of ’09 and had moved permanently to Denver that summer before, so I stayed in the area and worked. I continued to help with the downtown ministry; those kids changed my whole aspect of what it means to serve and to love. Life was back to “normal” it seemed. After my trip to Greece, the tumor on my 5th nerve doubled in size. I felt it in my jaw at first. TMJ runs in the family so I did not think much of it at first, until a few days later when my left side of my mouth went numb. Doctors put me on a heavy dose of a nerve relief medicine called Lyrica. I see now it was another one of the answered prayer moments, because I literally was a walking zombie. Doctors decreased the dosage when I restarted the Avastin chemo July 2010.
A month later, my sister was getting ready to attend college and during that time, my Dad was offered a job. My parents flew back into Denver and had dinner with me before driving home. They talked to me about the job offer and told me that they would not leave Colorado if I was not at peace (because my Mom had been coming up every other week to take me to chemo–sort of a big deal!) What they did not know is that I had been praying about an opportunity to move. I missed family and was hoping for a way to live closer to all my relatives, but had not told anyone but my little sister a few months prior. So here it was–another answer to prayer! We moved the end of June 2011 back to Ohio.
I really did not skip a beat on chemo treatments and restarted chemo here the week after we arrived. Actually it was the day before the moving truck arrived, because I had to get up early and go sleep in my parents closet to be out of the way and in a quiet spot. My doctors in Cincinnati Children’s are again very special people. Their care is amazing and I always have a great time chatting with them. They let me be part of their art show in October. It was my first time in getting my artwork out for public display–a fun and learning experience.
The plan was for me to remain on the Avastin chemo as long as possible. I was doing well considering I was on treatments for a year and six months. Then a blood clot hit, Sunday–January 22, 2012. It was not a chemo weekend, so there was no reason for me to spend it at my parent’s house–only a God’s timing situation. I am glad I was home, because it happened while I was in the shower. I have always struggled with major Charlie Horse cramps in my lower calfs. The pain I felt, I assumed, was a Charlie Horse in my upper left thigh. I tried to stretch it out but doing that caused the worst pain I have ever felt in my leg and stomach. I looked down to see my leg blueish purple and swelling; I felt faint and wanted to throw up at the same time. I still had shampoo in my hair so I got it out the best I could while I tried to call out for help. I was hyperventilating by that time and just started banging on the shower wall hoping Mom would hear it. She finally realized I might be in need of help and came in to find me barely standing.
There is not an actual known cause for the clot. It could be a number of things, but most probable is either from chemo or my hormones pills. I was taken immediately off both and spent a week in the hospital under watch before I came home. Not even a year later, January 9, 2013, I had another blood clot occurrence in the left leg and left lung. By God’s grace, recovery was fast and now I remain on the blood thinner–Warfarin–and currently in stable conditions due to being on steroid pill treatments.
To the current date (August 2013): Back in February, my MRI results showed that the tumors were remaining stable, at most was a minimal change in the amount of fluid within the tumor growing in the spinal cord at the base of the neck. My doctor, parents and I discussed a few possible paths to take: no further treatments besides the steroid pills or there were two different chemotherapy options–but the one, Sirolimus, was a better choice over the other.
At that time, I chose no further treatment and would wait until the next three-month MRI to see what the results showed and go from there. After our spring break vacation, I started to experience hearing loss in my left ear. By May, my left ear was no longer responsive to the hearing tests and I stopped wearing my hearing aid for that ear.
There were other changes: more numbness in my hands, especially my right hand, more balance issues and intestine problems. The MRI scan at the end of May showed that about 80% of the meningioma in the brain had grown significantly–resulting in all my side effects that had occurred since March. The chemo, Sirolimus, was again presented as it is one, if not the last, possible treatment option available for me at this time.
After much prayer and discussion with family and doctors, I chose to start the chemotherapy. My first dose was July 2, 2o13. I am still on the medicine and doing well on it considering that I also remain on the steroid pills. This combination is not usually recommended…but I don’t have an option to end steroids at this time. For the chemo, out of all the possible side effects listed, I have only encountered at most three; a huge answer to many prayers! 🙂
How long I remain on this treatment is uncertain.