Levi OlsonBrain Tumor Type
CraniopharyngiomaDate of Diagnosis
May 11, 2012Age Group (If you are a caregiver/family member please check Caregiver/Family Member)
Youth: 13 - 20 Years of ageCategory
Photography/Digital ArtArtist Statement (include type of art, techniques & materials used, what it means to you)
I used my Samsung A42 phone to take this photo of the sunset on the shores of Lake Erie with a beautiful reflection off the Pier. Taking in the brilliant colors of a sunset is an amazing way to end any summer day. This picture is important to me because it represents an opportunity to slow down, live in the moment, and appreciate the gift of another day. No matter what happens today I know that the sun will rise and set which gives me hope and motivation to keep on going despite all my health challenges.Bio (include your age, tumor type and date of diagnosis)
My name is Levi I am 16 years old and a two-time brain tumor survivor. At age 5, I was diagnosed with a large craniopharyngioma on 5/7/12. It was successfully removed through my nose (endoscopic endonasal approach) on 6/11/12 at Children’s Hospital of Pittsburgh (CHP). The tumor destroyed my pituitary gland, so for the last 10 years, I have been taking a multitude of different meds every day to compensate for the missing hormones. They allow me to live a normal life despite having adrenal insufficiency and diabetes insipidus.
In 2017 I was hospitalized at Dell Children’s Hospital of Austin with many challenging physical symptoms that caused me to miss most of the spring semester. I was eventually diagnosed with severe anxiety. With the help of my therapist and anxiety medications, I was able to recover fairly well that year. Unfortunately, in the winter of 2018, strong physical symptoms returned including constant headaches and many months of missed school. After a terrible 6 months, I entered a 3-week in-patient pediatric pain program at the Cleveland Clinic. That program helped me learn to manage my anxiety in ways that are still useful to me today.
In June 2019 a recurrence of the craniopharyngioma was discovered through my annual MRI. We again made the trip from my home in Austin, Texas to CHP and the tumor was removed on 7/12/19 by the same surgical team. I will always be grateful to the surgeons, doctors, nurses, and medical staff who have taken care of me over the years.