Timothy H Price Jr 1990 Scar photo

MY Bout With Brain Cancer
by TJ Price

My life since sometime in July 1989, has been very nerve-racking for my parents, to say the least. That is when I started having seizures. After several months of not knowing why I was having seizures, they took me to Dr. Holden, a pediatric neurologist who had just moved to Charleston. Dr. Holden told them that he thought I had a tumor and that it might be cancerous. This all took place at MUSC (Medical University of South Carolina) in Charleston, South Carolina, where I lived at the time. The chain of events that led to the discovery of my brain tumor and the treatment is, in my mother’s opinion, nothing short of miraculous.

It started, as I said before, in July of 1989, I was nine months old at the time. My mom had been at a baby shower for a friend. When she came home, I was acting very different. I stayed up all that night, screaming and fussing, my mom thought I might have an ear infection, or that the babysitter was letting me sleep all day. Nothing that normally made me laugh would calm me that night. The following morning my mom went to work and told the sitter that she would make a doctor appointment for me. But not long after she was at work the sitter noticed that something was wrong, she called my mom and told her that I was acting like I was passing out. Mom rushed home, which for her was an hour drive, but she made it in less than 45 minutes. After leaving the doctor, having been told there was nothing wrong, my mom drove me to the pharmacy to pick up some Tylenol. When she pulled the car into the parking space she looked over at me and noticed I was having a seizure. That was my very first one, or at least the first one that anyone saw. It took a few weeks and several more seizures before anyone believed her, including my dad. It seemed like I saved all of the action for when she was alone with me. Finally one night at the hospital, I had a seizure in full view of several nurses, doctors, and my dad and grandparents too! Of, course I do not remember any of this except the stories my parents tell.
One day in May, months after starting on seizure medications, and while my seizures were still not controlled, I had a grand mal seizure while at my grandmother’s house. When the EMS arrived they could not get an IV started, and I continued to seize for over 45 minutes. Finally en route to the hospital, still with no IV, still seizing, they gave me an injection of Valium. That is when I went into respiratory arrest, that’s like a code but your heart doesn’t stop. Once I was stabilized, I was transported to MUSC and put in the pediatric intensive care unit (PICU) in a drug-induced coma. I recovered quickly, and within three days was discharged from the hospital on even more medication to control the seizures. That’s when my mom insisted that the doctor ordered an MRI, a special type of scan that uses a magnet to view inside the body. Even though the doctor told her he didn’t think it was necessary, she told him that if he didn’t order it, she would find someone who would. After I had my first MRI, that same doctor gave my mom the actual films and told her they were useless so she could have them. It wasn’t until later that she found out the radiologist had reported there was what looked like a tumor in my right temporal lobe!
A few weeks after my PICU stay, I started to get worse again. I had continued having seizures each day. My mom had been searching for another specialist to take me to but there was no pediatric neurologist in the Charleston area when I first got sick. This is where the miracle stuff starts. Dr. Holden moved to Charleston and had started a new program at MUSC for pediatric patients. He was one of two pediatric neurologists that started that first week of June 1990. When my mom called Dr. Holden that day, she told him what was going on and told him she’d been waiting for him to get here for months. She explained about having the MRI films and he asked her to bring me right away to the trauma unit. This was a big deal because first of all, he was new to the hospital and no one there really knew him, and second because they had never treated medical patients in the trauma unit. My mom had me there in less than 15 minutes, films in hand. He looked at the films. Then he asked for permission to present my case at a conference that afternoon.
The following morning I had my second MRI. At the time the MRI machines could not be brought into a building, they had to be lowered into the building, so the MRI lab was separate from the hospital. While my parents were waiting anxiously for my test to be finished, Dr. Holden walked in with a group of five or six other doctors. That is when my mom says she knew it was bad. You see, doctors don’t ever walk a half block from the hospital to see a film on a patient. She knew then that something must be very, very wrong. Dr. Holden told my parents that the scans showed a tumor in my right temporal lobe, and it was large in size. He had already talked with a pediatric cancer center in Texas and one in Canada. As it turned out, Dr. Holden had just moved from Baltimore, Maryland and he recommended a pediatric surgeon there, at Johns Hopkins Medical University. The surgeons’ name is Ben Carson, and at the age of 37, he was the youngest head of a pediatric neurosurgery department in the country. My parents flew with me to Johns Hopkins Hospital in September of 1990 where I stayed in the hospital for several weeks having continuous EEGs run, to determine whether any other part of my brain was affected when I had a seizure. At the time I was having so many seizures each day that they had become too many to count. My dad says they would count 100 seizures before noon and then would get so scared that they would quit counting, sometimes not knowing is better.
On October 10, 1990, I had my first neurosurgery. They removed the tumor in my right temporal lobe and when the pathology (that’s the test results that tell what the tissue is) came back the surgeon couldn’t believe it, so he sent the specimen to Duke University to confirm the results. So on December 21, just days before my 3rd Christmas, when I was just 26 months old, my parents were told that my tumor was grade 1-2 Astrocytoma with Oligodendral differentiation. This means that the cells of the tumor were like asteroids, the chances of spreading are big and Oligodendrial means that the cells had multiple nuclei. Needless to say, for a 2-year-old, I had a big Christmas that year.
When it comes to brain cancer, there are 2 types that are the most serious, Neuroblastomas and Astrocytomas. Astrocytomas are bad but when they are passive, meaning when they are low grade and not growing people have a chance to survive. A grade 3 Astrocytoma has about a 6 month to a year chance for survival, at least that is what they told my parents. The doctors told my parents that if there were no remains of cancer cells then I had a good chance of survival, but since it was an Astrocytoma, chances of that were very small. They were hopeful though because mine was a grade 1-2 and appeared not to be growing.
As far as cancer goes, the surgery was successful; we knew this because I had so many follow up MRIs. I had one every month for 6 months, then every 3 months for 6 months and then every 6 months for many years. It was a success, but it didn’t entirely fix the problem, I was still having about 5 seizures a day. I went through more trials with medicine, drug studies, scans, and EEGs. After 6 years of med’s, tests and seizures, and because now I was older, I asked my parents to please let me have the surgery the doctors said might make me better. I was really tired of having all those seizures, and in fact, I was starting to just be plainly tired of the dealing period. My parents had researched the surgery, but no one in the area in which we now lived, Omaha Nebraska, performed a Cortical Resection with Grid and internal EEG. In order for me to have this surgery, my best chance of living seizure free, we would have to return to Charleston, SC.
My parents are from Charleston, and by 1996, they were anxious to stop traveling every 3 months from Omaha to Charleston, (my mom refused to get a different doctor for me even after we moved since Dr. Holden saved my life). After one trip to Charleston, and my big plea for the surgery, my parents packed me, my baby sister, Faith, and all of our belongings and moved back to South Carolina. There was a doctor at MUSC who would perform the surgery. One week before I was to be admitted to the hospital the doctor called my mom to tell her he was sorry, but due to a family illness, he had to move back to New Mexico. The search was on for someone qualified to operate. Although my parents really wanted Ben Carson to do the surgery, the insurance company had other people in mind, and so we went to Duke University, the same place that the original tumor was sent for testing.
In September of 1996, I went into the OR again. My mom shared a caption from a book she read once with me, it goes, your never the same once the air hits your brain I believe that’s true. The first surgery was to place a grid directly on the brain over the area left after the tumor was removed. It was supposed to take one to two hours. After almost 6 hours they were done, apparently, there was a lot of scar tissue, and the doctor was shocked. He said I would be in a lot more pain than they originally had hoped, he was absolutely right, as my luck goes! My mom said I was in so much pain I could barely speak. I was just 6 years old, almost 7. My parents wanted to be in the ICU with me, but they couldn’t be because there was an emergency going on. Apparently, some mom and her boyfriend had shaken her baby so hard the doctors said his brain looked like it had been smashed against a brick wall. By the time my parents were allowed in the ICU, I was motionless. When my mom leaned in to kiss my cheek I whispered My worst fear She knew what that meant, my worst fear was that I would have a headache that would be so bad they couldn’t make it better. I had a lot of headaches after my first surgery so I knew how bad they could be. It took a few hours before the medicines started to ease the pain.
The grid that was in my brain was connected to wires that fed into an EEG machine, so I was on a continuous internal EEG with video monitoring. The wires came out of holes drilled through my skull and sealed with a kind of glue. The first night I was out of ICU and on the monitors I pulled the dressing off in my sleep. This caused the wires to move, and the glue to loosen and I leaked spinal fluid for several hours while my dad sat next to me wondering how he was going to tell my mom that he had been there when I died. The nurse didn’t know what to do so she just left me and my dad like that. Around 5 that morning the EEG technician came in to change out the videotape and when he found out what was going on he called everyone in for the emergency. If the grid moved in the brain it would mean I could have major problems. That night nurse got 3 days off after my mom got through with the hospital people. The next night my mom stared at me all night worried I would do it again, without any sleep she was a basket case so she requested a sitter for the next night. Mom slept in the room with me while the sitter was supposed to be watching me, but the sitter fell asleep. When my mom woke I was having a seizure and the sitter was sleeping away in the chair. After my seizure was over my mom turned the camera onto the sitter and got proof she was sleeping on tape. The sitter no longer works for that hospital after my mom showed the tape to the hospital people. After that everyone was really scared of my mom.
After 7 days with this grid and the wires hanging out of my head, I went back to the OR, for my third time, they were going to operate again on my head. I had my last seizure ever in the holding room waiting to go into the OR. My mom was there with me and she said last one baby, you won’t have any more after this She was right! I have been seizure free ever since. Unfortunately, I did have a few complications after the surgery. My time spent leaking fluid and being open to the air caused me to get meningitis, and because of meningitis, I developed a cyst in the area where the tumor had been. The cyst put pressure on the rest of my brain and 3 months after the surgery I was back at Duke having a shunt put in to drain the cyst so the fluid would not build up. The shunt doesn’t function anymore I don’t think, I will always have it and at first, for a long time, I would hear the swish as the fluid that had built up would be released into the tube that goes down into my gut where its reabsorbed.
So there you have my story, every medicine available at the time, 4 surgeries, many hospitalizations, and hundreds of tests later here I am. Now in my late 20’s just about everything is a vague memory, remembered mostly through the stories my parents tell and the thousands of pictures. I recall bits and pieces and maybe that’s the best thing of all. I remember making a promise to my mom before the surgery at Duke, that no matter how bad things got I would survive. I remember thinking a few times that I wished I hadn’t made that promise to her. I remember my mom telling a doctor that he was finished when he was trying to do a spinal tap on me. He was telling her that he hadn’t gotten the fluid yet and she told him that may be true but you are finished in here and she made him leave the room and never let him back in. I remember terrible spaghetti and laughing even though it hurt because it made my mom and me gag. And my dad being with me the night I pulled the dressing off, holding me and trying to act like nothing was wrong. I remember my grandmother being there and talking so much when my head was splitting, and asking them to send my granddad in when they moved me because it hurt for me to move and I wanted him there. Every once in a while something triggers another memory; its all a part of me, and who I am..

12/22/2015 at MUSC Childrens Hospital with Ben Carson and My Parents Pam and Tim Price12/22/2015 at MUSC Childrens Hospital with Ben Carson and My Parents Pam and Tim Price.