My biological father, Cory, was diagnosed at age 24 with NF2. His was by spontaneous mutation; it was passed on genetically to me.
Daddy Cory died 2 1/2 years later–July 1987–after under going eight brain surgeries. My mom found out she was pregnant with me a few weeks after his funeral.
My mom remarried a man name Mark. He adopted my two older sisters and I. Four years later, my younger sister was born.
We moved to Colorado when I was six. We lived there until we moved back to Ohio in June of 2011.
Minimal changes in my body occurred growing up: weakness in ankles, loss of bicep in left arm, voice change. It was not until I was 14 that my hearing started to decline and my parents noted the way my ankles turned in when I walked. After failing multiple ear tests, an MRI was ordered.
November 18, 2002 is when I received news and was officially diagnosed with Nf2.
Exactly one month later I underwent a surgery to remove a grape-sized tumor that was pressing on my spinal cord and affecting the way I walked.
February-March 2003, I underwent six weeks of radiation that targeted mainly the Vestibular Schwannoma (Acoustic Neuroma) and the tumor on the 5th nerve. I underwent six weeks of radiation again in January-February of 2005, which targeted tumors the neck and shoulders.
With my hearing slowly declining, I got hearing aids in January 2005. They lasted until I upgraded the aids in May of 2012!
I attended Colorado Christian University in Denver. My sophomore year I went through a few weeks of intense steroid treatment to see if the tumors could stabilize.
Fall of 2008, I started the oral chemotherapy treatment, Tarceva. Doctors stopped the treatments by Thanksgiving as my body was not responding well to the side effects even though we saw positive results in the MRI scans.
A few hours after my last final, I had surgery to place in a medi-port. Spring 2009, I started six weeks of a chemo called Avastin. It would be given thru IV.
I moved to Denver permanently that summer and finished college within my own personal goal of 3 1/2 years. I still walked with my class in May of 201o. Two weeks later, I went with a group from CCU on trip to Greece.
Returning from Greece, in the midst of getting back to work and moving apartments, I started to experience sharp pain in the left side of my mouth. When the numbness set in, it was evident that something was changing in the brain. An MRI showed the tumor on the 5th nerve had significantly grown.
July l2010, I restarted the Avastin chemotherapy treatment. I went to Children’s every other Friday for the dose. My mom made the 5 hour (one way) trip to be with me Thursday evening and take me to my appointment on Friday, then traveling back home that evening. I remained on the Avastin treatment until my DVT in January of 2012.
August 0f 2010, my parents take my younger sister to college. It was during that week that my dad was offered a job. After praying about the offer, they talked first with me. Little did my parents know that I had been praying for a chance to move and be closer to extended family.
My health needs was a huge factor to consider, but my doctors in Denver highly recommended the Oncology department at the Children’s Hospital in Cincinnati, so in moving to Ohio in June 2011–I transferred there.
January 22, 2012, I experienced a DVT in my left leg. They stopped the Avastin treatments for good.
January 9, 2013, I experienced yet another DVT in my left leg. This time it was much larger and went to my lung.
My MRI scans from May showed that ~80% of the tumors in the brain had grown, resulting in the current physical side effects. An oral chemotherapy treatment, called Sirolimus, was discussed.
My first dose was July 2, 2013. I am doing well with very minimal side effects from the drug. How long I remain on this treatment is uncertain.