In January 2015, I was waking up with headaches. I was told by my family doctor that I had migraines. The steroids and pain medications were just enough to mask what was really going on in my head.
Jan. 31, 2015, was a day my family will never forget. I woke up that morning with a really bad headache. Shortly after getting out of bed, I began to throw up non-stop most of the day. My parents took me to the doctor’s office where they ran tests for strep and more. Those tests both came back negative. They sent me to Mary Lanning Memorial Hospital, in Hastings, for some blood work, then let me go home. My mom and dad got very worried and decided to take me back to the emergency room. The ER doctor said he was sure it was a migraine headache, but he wanted to do a CT scan, just as a precaution. Shortly after the nurse came into my room and said the doctor wanted her to get a heart monitor started on me. My mom kept asking, “What is going on?” Just then the doctor walked into the room and asked my parents to please have a seat. He went on to tell my parents that there was a mass on my brain the size of an orange, and they were sending us by ambulance to Omaha. I didn’t realize what was really going on. I just kept thinking, “What is happening, why are they putting my in an ambulance and why is my mom crying?”
After arriving in Omaha, we met with the neurosurgeon who would do my first craniotomy. I remember him saying, “Nick, you have a brain tumor and we are going to go in and remove it. When we are all done, you are going to feel amazing.” I said okay.
On Feb. 2, 2015, I had surgery to remove my brain tumor. After the surgery, the neurosurgeon told my parents that my tumor looked more aggressive than he originally thought. We would need to wait for pathology results. Feb. 12, 2015, we got the call that would forever change our lives. My doctor told us that I have grade four (4) glioblastoma, a very aggressive form of brain cancer that has no cure. He went on to say that I needed to start radiation and chemotherapy immediately. My entire family was in shock. I did not believe that I had brain cancer because I felt fine, there was no way, they had to be wrong.
Unfortunately, they were not wrong and a week later, I was back in Omaha meeting with a radiation oncologist to discuss my treatment plan. I did 30 rounds of radiation. For six weeks, I had my head bolted to a table with a radiation mask. I had surgery to have a port placed so I could start chemotherapy. We traveled to Children’s Hospital in Omaha every other Friday for one year for my infusions. I also took chemo pills at home. I was very fortunate because I tolerate these treatments very well. Not all kids are so lucky. I had MRIs every three months to check for tumor regrowth.
Finally, on April 15, 2016, I had my last chemo treatment. I was released from treatment to go live my cancer-free life with follow-up scans every three months. Things were going great. I was now a junior in high school and having fun with my friends.
On Oct. 27, 2016, I went in for routine MRI. Unfortunately, this MRI showed enhancement and swelling in my brain. My oncologist said we need to have the scan looked at by the tumor board. A few days later, my doctor called to say the tumor board agreed my tumor was back. She also said that I needed a biopsy to know 100 percent that this was in fact tumor regrowth. On Dec. 1, 2016, we met with the neurosurgeon who would do this biopsy. He told my parents that he was sure this biopsy would show tumor regrowth. My mom contacted the Brain Tumor Network and starting looking for clinical trials. Dr. Chow from Cincinnati Children’s Hospital called after reviewing my records. He said that my case was very tricky and their tumor board also agreed my tumor was back.
On Dec. 12, 2016, I had my second craniotomy. This surgery was a lot harder for me than my first surgery. My oncologist said I may need to do some rehab if I continue to have memory problems. On Dec. 15, I got to go home. Pathology results would take seven to ten days. On Dec. 21, my oncologist called to tell us the pathology results were clear, no tumor regrowth. This was an answer to prayer.
I have known from the beginning that this cancer had a very high re-occurrence rate and that there is no cure. Most of the time, I try to say positive and not think about it too much, but I have already had two brain surgeries and sometimes I can’t help but wonder what is next. Memory loss, speech difficulties, personality changes, vision loss and death are all real possibilities.
This diagnosis has truly given me a new appreciation for life. I never want to take anything for granted. I must be strong for my family, and I believe laughter is really good medicine. If I can keep my family laughing, then they’re not crying. There is nothing worse than seeing your dad cry. I honestly believe that the hardest part of this diagnosis is watching my parents and sister struggle with the fact that there is nothing they can do to make it better. Being on the sideline has got to be scarier than I can even imagine. We desperately need to find a cure, so more parents don’t have to watch their kids go through this and so brothers and sisters don’t have to grow up without each other. I know one thing for certain, as long as I have God in my life, I am promised an amazing future.