Adler’s journey has always consisted of pain.

It’s what lead us to his diagnosis in 2014 at Lurie Children’s Hospital in Chicago and it is how we unfortunately learned that his tumor in his cervical spine had been slowly growing for the past two years as they saw in an MRI in June of 2019.

His oncologist and neurosurgeon felt a biopsy was necessary to do and test for a specific mutation. Which Adler did test positive for and that gave the team a better direction for a targeted treatment plan. Unfortunately the 5+ hour high risk surgery left Adler without the full use of both of his arms. Adler has been in recovery via occupational and physical therapy. He is gaining strength in his arms and his neck as the surgery was successful for the tumor biopsy but left him with chronic pain as well as the arms not working. Adler was enrolled in a two year phase 2 trial at Lurie Children’s Hospital in Chicago. He takes pills twice a day to combat the tumor in a unique way, It requires: monthly checkups, blood draws, med pick up and a battery of testing to monitor him while he’s on this medication. The tests include a full brain and spine MRI every other month and an echo-cardiogram (EKG) to monitor his heart. These tests are daunting and exhausting to worry about so often but they are necessary. It was the best option out of the options we had and we were grateful that we still had options for him. This is Adler’s second time through treatment since he was diagnosed at age 4.

His strength is endless and his love and light are contagious but this journey has been long, taxing and just absolutely exhausting. Physically, emotionally and financially. the travel to and from Chicago will be repetitive for a very long time. There is a finish line here somewhere…

We appreciate the continued love and support.

Thank you.