Patient Stories

Scar after first surgery

Sitting up for the first time in four days after surgery

Scar after second surgery

Recovery from third surgery

Progression of scoliosis- before surgery (86-degree curve) and after (35 degrees); 2020 (present)

It was a cold crisp morning in March when I was seven. At school, I sang in music class, ate lunch, and played at recess. When my mom picked me up that afternoon, I told her my back was hurting. She asked me if I had done anything at recess or in P.E. that might have caused it, and I said no. That night I had trouble sleeping because every time I laid flat on my pillow, my back would hurt worse. My mom stayed by me, giving me Tylenol and extra pillows so I was at an angle. It got me through the night.

In the morning, my back wasn’t feeling any better, so my mom made an appointment with my regular doctor that afternoon. She mentioned to him that I played on the “monkey” bars at school a lot. He ordered x-rays and reported, “She does have a slight degree of scoliosis, but nothing that should be causing any pain.” He referred me to an orthopedic doctor which we would see in a week. My mom was told to keep up on the Tylenol for my pain every four hours.

For the next week, I slept at an angle which slowly increased over time because the more horizontal I laid, the worse it hurt. The day of my appointment arrived, and we were hopeful for some answers and good news because the pain was not getting any better. The doctor ordered more x-rays and looked at them in closer detail. “Indeed, she has a minimal curvature of the spine, but not to the point that should be painful. I’d say keep administering Tylenol and we will follow up in a week or so.”

When it was time for the appointment, my mom had a feeling the same thing was going to happen, and that nothing had changed. Sure enough, that was the case. Out of frustration she said, “Can we order an MRI? She is still in pain and it is not getting any better.” “I guess we could try,” the doctor uttered hesitantly.

On May 15th, 1998, I went to my first MRI at OHSU (Oregon Health and Science University) in Portland, Oregon. I was unsure of what to expect, but both of my parents were there by my side. What should have taken 20-30 minutes turned into two hours before the scans were complete. The news was not good, and our lives were about to change. I remember some very friendly nurses taking me into a staff break room to color while the doctors told my parents the news.

I was diagnosed with a benign, Juvenile Pylocytic Astrocytoma, spinal cord tumor. This meant that the tumor was non-cancerous (praise The Lord!) and that there were two cysts filled with fluid. The orthopedic doctor I saw in my town of Hood River saw the scans. He explained to my parents that I needed to be seen at OSHU Doernbecher Children’s Hospital the next day. We packed our bags with a few changes of clothes unsure of how long we would be gone.

Early that morning, we met with my neurosurgeon, Dr. Joseph Piatt. He explained that he looked over the MRI scans and confirmed that I had a large tumor he would operate on, unsure of how much he would be able get because it was very risky. He provided a mental picture of what this tumor wrapped in the spinal cord looked like: “Imagine Jell-O, green and yellow. The green is good tissue, the yellow bad tissue (tumor). If you mixed the two together, it would be very difficult to take out all the little pieces of yellow ‘Jell-O.’” He also warned that there was a possibility after surgery that I might have partial or full paralysis. He advised us to go home, pack a couple weeks’ worth of things, and come back in three days. The hospital was now our home.

Thursday, May 21st, 1998, we arrived at 6 a.m. at OHSU Children’s Hospital surgery waiting room. We were led into a very outdated 1970’s yellow room with rows after rows of beds. I was hooked up to all sorts of monitors and machines, looking like something out of a Sci-Fi movie. Some nurses wheeled me into a giant cold room filled with shiny bright lights. They helped me onto a very narrow, cold, steel, skinny table. The anesthesiologist introduced himself and placed a yummy smelling mask over my mouth and nose. He told me to start counting backward from ten. “10…9…8…7…..”
Meanwhile, my parents and extended family anxiously waited, praying and keeping in touch with those who couldn’t make it. Finally, after nine long hours, the surgery was complete and I was in recovery. The doctor greeted my worrying family and told them that everything went well but he would not know the extent of the damage until I was more awake. He ordered that I lay flat on my stomach for four days which was hard to believe because for almost two months I had been unable to; it was a wonderful feeling. I was no longer in pain, except for some soreness and discomfort from just having major surgery.

After about a week, I was transported to Legacy Emanuel Children’s Hospital, three miles away for rehabilitation and physical therapy for five weeks. It was intense and grueling with a strict schedule, but overall it is what I needed to do in order to get out of there! At the time of discharge, I was not fully walking on my own, but within a few weeks I was able to show off to my family and friends the progress I had made in walking without help.

Since 1998, I have had two other surgeries to remove the tumor and, in the summer of 2005, a surgery to fuse titanium rods to my spine for scoliosis. I have bi-yearly MRIs to check the status of the tumor and since my last surgery in 2002, the pesky thing hasn’t changed (Hallelujah!)

Through this whole journey, my family and friends have been a huge help to me when I needed it. My parents were with me for every MRI, arm poke, surgery, and therapy. My dad spent many long nights sleeping on the cold, hard linoleum floor beside my hospital bed when there was nowhere else to sleep; I am truly blessed to have them as parents. But I am most grateful towards God and the miracle He has given to me. Sometimes I wonder what it would be like to be “normal,” but it quickly escapes my mind because I know that He has chosen me to be this way; He loves me just the way I am!