Hi! My name is lzabella Phoenix Voelker, and I am a 13 year old from Holstein, Neb. In May 2016, I was diagnosed with a Pineoblastoma Brain Tumor. Although my type of cancer is less than one half of one percent of all brain tumors in children, brain tumors are now the most common cancer occurring in kids age 0-19. Brain tumors are the leading cause of disease-related pediatric deaths. The good news is that the main reason for brain tumors now taking the No. 1 spot is due to the awesome advancements that have been made in treating leukemia. The bad news is that more than 4,830 children and adolescents between the ages of 0-19 in the United States will be diagnosed with a primary brain tumor by the end of this year. Even worse, Nebraska is rated as the third highest state regarding pediatric brain cancer in the United States.
No kid should ever have to hear the words . . . you have cancer, but after one week of severe, wake you up in the middle of the night screaming elbow pain and four doctors later, that is what I heard. I had cancer.
I had a brain tumor in the very center of my brain. It had blocked five days' worth of spinal fluid from draining out of my brain and would have killed me within 24 hours had my doctor not seen that my eyes had started to bulge. Twenty-four hours . . . and I would have been dead. Most kids with Pineoblastoma are diagnosed on an autopsy table, but I was blessed that we found my tumor in time.
After they drained the spinal fluid from my brain and performed a biopsy, I was told that they needed to do surgery immediately to remove my tumor. My tumor had grown from the size of a dime to the size of a quarter in the four days it took to get my biopsy back. My tumor was surrounded by the six major blood vessels that provide blood to the part of my brain that controls my major organs. These blood vessels had the consistency of tissue paper and if even one got nicked I would not make it. I had a five percent chance of making it through my eight-and-a-half-hour surgery.
Before my surgery, my mom had to talk to me about what I wanted if I wouldn't have survived. I wrote my will and planned my funeral. Granted, I was only 12, so it was more about who got my Legos and whether I wanted to be buried or cremated, but not something I thought I would have to worry about at my age. My middle name is Phoenix, so I thought it would have been cool to rise from the ashes, but I didn't want to die.
There was a long list of side effects if I lived through surgery, too. I could be deaf, have trouble with double vision, never be able to look up again, or be in a coma. I was once again blessed; I only had double vision for a few weeks following surgery and some headaches, but this was just the first week of my journey.
Once I healed from my second surgery and had stem cells removed in case I needed them later in my treatment, I had my port placed. Then I headed off to San Diego for Proton Radiation Therapy of my brain and spine. My mom and I had to leave my family for two months and go to a place where I didn't know anyone. Nebraska doesn't have Proton Therapy; we only have Gamma Radiation.
Proton Therapy has pinpoint accuracy and stops within millimeters of the tumor site. It decreased my risk of secondary cancer and damage to the rest of my organs. It was while I was there that I found out that my protocol was written in 2003 and that the kids with my type of cancer were removed from the study because they skewed the results.
It was there, I also discovered that sometimes life isn't about what is right and sometimes money gets in the way of helping kids.
It was during my chemotherapy treatments that I watched as children had severe burns from a radiation machine that could have been prevented had they just been told about a proton machine less than 15 miles away. I have spent the last year and a half of my life watching other kids suffer from the lifelong side effects of radiation and chemotherapy. Gamma radiation is known for making kids' with my type of cancer throats always hurt, damaging their esophagus, increasing their risk of chronic pneumonia, increasing their risk of heart attacks, destroying their reproductive organs and potentially fusing their bowels, along with causing damage to their eyes, kidneys and liver.
I had to make one of the toughest decisions of my life while I was in San Diego: Do I follow protocol and get hit with an extremely high dose of radiation and come out of radiation with a 30 to 35 percent reduction in cognitive functioning, or do I reduce the amount of radiation to the tumor site and risk my cancer returning knowing this would be a death sentence? A study had been done in 2012 on my type of cancer. It only had 10 kids, but all 10 survived at the lower dose, so I split the difference and took the risk. Lucky for me, my doctor was a part of the research team, or I would not have known about it. The study has yet to be published. I also discovered that a lot of the time, doctors follow the older protocols for fear of being sued and start to freak out if you don't want to follow the "rules." One of the chemo drugs in my protocol had horrible side effects and no real evidence of helping kill my type of cancer. Once removing this drug from my treatment plan, we began calling my plan the "Bella Protocol."
After finishing my radiation treatment, I returned to Omaha for the remainder of my chemotherapy. Chemotherapy drugs come with a whole new set of side effects, both short- and long-term. Most of you know about chemotherapy causing nausea, fatigue and hair loss, but to kill the cancer cells, chemo kills all the healthy cells, too. So once again I was left with a huge decision between taking an extremely high dose of chemotherapy that would have taken me once again away from my family for months while my immune system tried to recover with the help of the stem cells they had taken from me earlier or staying the course with the drugs we already had on board. I chose to stay the course.
Childhood cancer research only gets 4 percent of the government cancer funding. The drugs used on kids, like me, are the same drugs used in adults. They may kill the cancer, but they leave lasting side effects on our brains, because unlike an adult, our brains are still growing. The current drugs cause huge learning disabilities, stunt our growth and leave a lot of us without the ability to have children of our own. We need to find a better way to treat kids with cancer. We need to find a cure!
That's where Team Jack comes in ... their research is looking for new and better ways to treat pediatric cancer. I am a survivor. I will continue to go back for scans every three months for the next six years.
I watch as some of my friends make it, and I cry as others do not. I get scared with every headache that my cancer may come back like so many other cancer kids that I have grown to love. I force myself to stay positive, because that is the best thing I can do to fight this. I speak out to help all of those who must travel this path after me. I ask for help because we cannot do this alone.