Tim's Potato Brain

For almost 6 months, our family was able to shake the shadow of the “Potato.” Going through such a grueling and terrifying medical ordeal had taken its toll not only on Tim, but on Alanna and Julia as well. For those few months, we did our best to get back to “normal.”

In January 2026 a routine MRI revealed an indistinct shadow on the rear part of his frontal lobe – completely distinct from the original tumor.  At first, the doctors weren’t worried. It was noted and a follow up was scheduled for March.  At that follow up, the initial shadow had coalesced into clear tumor activity with a second spot in the brain stem.  After a barrage of testing including a surgical biopsy and spinal tap, it was determined that the tumor had recurred as a Grade 4 Astrocytoma – meaning that it was no longer benign. In addition, tumor DNA had also breached the blood/brain barrier into the cerebral spinal fluid – a rare but extremely serious complication known as leptomeningeal spread.

In May 2026, Julia and Tim traveled to Rochester in order for Tim to undergo a grueling 2 week course of Full Brain & Spine Proton Radiation. Tim is now back on daily chemo for the foreseeable future. His doctors are hopeful, but his case is rare enough that no standard of care or useful data exists.  He is looking at an indefinite future of aggressive treatment with no clear prognosis. Tim, Alanna and Julia are doing their best to stay positive and keep living their lives, but Tim continues to struggle with the likely permanent after-effects of the radiation (including cognitive symptoms, fatigue and some leg weakness) and there is still a long road of treatment ahead.