Liesel Von Imhof, 18, came to Seattle Children’s from her home in Anchorage after learning the reason for her migraines: a ping-pong ball–sized tumor in the middle of her brain. In honor of Childhood Cancer Awareness Month, here she shares her journey of diligently working to achieve her goals despite recovering from brain tumor surgery during her senior year of high school.
How long does it take to recover from brain surgery? What does “recovery” really mean? Would I be the same as before, or to what degree would I be different? These were the many questions swirling around in my mind on July 12, 2016, when I sat next to my pale-faced mother in the hospital as we learned I had a brain tumor. I was diagnosed with a Pilocytic Astrocytoma tumor in the third ventricle of my brain.
With this diagnosis, I was soon on a journey of self-discovery to learn just how much grit and determination I really had. Whether I liked it or not, I was going to have to go through two brain surgeries. My life depended on it.
I gripped the thin hospital bed and prepared myself for the ride.
Participating in ground-breaking research
As I prepared for surgery at Seattle Children’s, I had the opportunity to participate in a Tumor Paint clinical trial. It was explained that Tumor Paint acts as a molecular flashlight that aims to assist neurosurgeons in distinguishing tumor tissue from normal brain tissue.
Despite some hesitancy on my mother’s end about me being injected with bright green fluid that contained compounds derived from scorpion venom 24 hours before my surgery, I insisted that I be allowed to participate because I was thrilled to be part of ground-breaking medical science.
My surgery went well, and my surgeons Dr. Amy Lee and Dr. Rich Ellenbogen were able to remove my tumor from the deepest part of my brain. After the surgery, I was also glad to learn that my tumor did in fact glow when it was placed under the special Tumor Paint laser light.
I believe my participation allowed the trial to continue to move forward with the hope that the drug could eventually become a part of standard care. How cool is that?
Three weeks after surgery, I returned home to Alaska. My goals were clear: I wanted to start my senior year of high school on time and try to maintain my valedictorian status. While some doubted my ability to achieve such lofty goals after brain surgery, I was determined.
My mom had me do the same things I did before the diagnosis. I baked and played the violin (I was awful at first because I couldn’t get my fingers to move fast enough!). I sewed, I went on daily walks and did puzzles. And I took a lot of naps.
I was so determined to be valedictorian, that I made my mom a presentation detailing the reasons why she should still let me take my original challenging schedule for senior year with four Advanced Placement (AP) classes. Today, I laugh at how unorganized my ideas were, and the delusions in most of my arguments. But, it worked, and both my mom and counselor allowed me to continue with my tough schedule, with the exception that I would have one free period mid-day to rest my brain.
On Aug. 22, 2016, less than a month after my second surgery, I started my senior year of high school. On the first day, I was disoriented by the noise and activity and lost my bearings in my own school. I forced myself to stop and assess, and used visual cues from my surroundings to realize where I was.
To compensate for my slowly improving memory, I meticulously wrote down my homework at the conclusion of every class. I also found I was disoriented by the passage of time; 5 minutes and 50 minutes often felt the same to me. So I started wearing a watch.
When I was cleared to exercise again, I immediately signed back up for cross-country running. I was a three-year varsity veteran, and my team and the sport are an important part of my life. At first, I couldn’t even run a mile. However, I was determined to race in Regions so I kept pushing myself at each practice. When I ran the last race of the season, I shed tears of joy, reminding myself that just a few short months ago I needed help to walk.
As for my grades, they were less than desirable at the beginning. I was starting to regret advocating that I remain in four AP classes, but I wasn’t ready to give up just yet.
I hired a math tutor that fall and stayed after school most afternoons for extra help. I arranged study groups with friends. I went online at night to refresh myself with the class material because I forgot a lot of it during the day. Reading a book took twice as long. But, my extra work paid off. My calculus teacher, who was initially skeptical about my placement in her class, congratulated me at quarter-end for my solid performance on the midterm.
Three months after the surgery, I commented that I was feeling back to normal. My mom said that I was nowhere near it.
What I discovered is that there are levels in recovering from brain surgery. When I said I was back to normal, I meant that I was finally feeling in charge of my own thoughts, as opposed to them feeling sluggish and unfamiliar to me. Later, in the third quarter of school, I finally got an A on a math test, which had previously been my strongest subject.
Regaining the confidence to embrace the future
Even while back in Alaska, we remained in touch with Seattle Children’s. My care team provided continuous encouragement to my family and I for several months. It was a huge confidence booster. They gave me the determination I needed to stay on my original path – I decided to apply to Harvard’s early decision program in November.
I had to wait to write the essay until I could coherently bring my thoughts together, which meant that I submitted the application no sooner than the day it was due!
When I received my acceptance email on Dec. 14, it was one of the best days of my life.
I continued to improve into the second half of the school year. I competed on my high school varsity cross-country ski team. I got straight A’s in school second semester, and did in fact earn the Valedictorian honor!
However, while I’d like to think that my brain is completely cured, some short-term memory loss from surgery still remains. Most common is when I forget I’ve had a conversation with someone, and bring up the same topic again a few hours, or a day later. But, I have learned strategies to compensate for my injured memory. I take time before I speak. I bring up a topic, but from a new angle. I also write things down more than I did before.
As I look back on my journey, I realize I have learned a lot and it has made me a more empathetic person. I’ve always been confident in my abilities, but this experience provided an unexpected test.
I have been deeply humbled and have become more grateful. I rejoice that I am alive and still able to work toward achieving my dreams. I am so excited to be starting college and I hope to major in biomedical engineering; I am ready for my new future.
The Tumor Paint clinical trial at Seattle Children’s is supported by Blaze Bioscience and Gateway For Cancer Research.