Travis was a perfectly healthy kid, until the day he wasn’t. He was wicked smart, athletic and funny; a typical second grader. One ordinary August evening, Travis had a bicycle accident that started our lives in a direction that I could never have anticipated. He was diagnosed with an inoperable brain tumor on August 12, 2010. He was eight years old. The technical name is Grade II Diffuse Infiltrating Glioma. He’s 20 years old now, and still smart and funny. Unfortunately, healthy and athletic sort of took a walk.

Everything unfurled in a kind of surreal slow motion. That’s been pretty much the story of his life ever since. We didn’t get a diagnosis the night of the accident, only a mention of “something” and “irregular signals crossing the corpus callosum”. Nothing made much sense, but I figured it was no big deal or they would have kept him. We followed up with the family doctor the next day. It wasn’t until the following week, after an MRI just to rule out anything serious that I heard the words that shattered my soul. “Travis has a brain tumor. You need to get him to a pediatric neurologist immediately.” It was another month of frenzied doctor appointments and testing before we had an idea what we were dealing with. Travis had his first brain surgery then, to place a shunt in his brain. Part of the tumor was blocking a ventricle, causing fluid to build up and put pressure on his brain. That could lead to all kinds of serious and irreversible damage. During that surgery, the neurosurgeon was able to get a tiny piece of the tumor for pathology. It was another six weeks before we got any information on that.

The pathology came back non-malignant. I didn’t understand why they didn’t say benign. Essentially, anything that doesn’t belong in the brain can become deadly, so they don’t really classify brain tumors the same way as other tumor types. Brain tumors have grades I through IV. Travis’ is a grade II, which means it is slow growing. That doesn’t mean non-fatal. That means it will take years to shut everything down, instead of months, if there is growth that can’t be controlled. His tumor carries a high risk of transformation to a higher-grade tumor and or progression. The tumor was stable when we found it, which meant we just waited and watched. That lasted two years, then he had tumor progression. He started chemotherapy the night before his eleventh birthday. The original plan was nine months of oral chemo. Unfortunately, Travis got so sick form that treatment that it had to be stopped before he completed the course. He was put on a different chemo and treatment was pushed further out. He was on chemo for a total of twenty-one months. He can’t have radiation, due to the nature and location of his tumor. It’s mainly in the hypothalamus, which is in the center of the brain. It’s diffuse, not a solid tumor. In a sense, it’s more like freckles than a mole. It can’t be radiated without damaging healthy tissue.

The tumor has been stable for eight years, which is great news. The not-so-good news is that he’s been dealing with years of negative impacts on his body from the chemo. He’s had a headache that never goes away since 2012. He has chronic daily nausea. The most terrifying part though is that he developed epilepsy in the spring of 2021. He has life-threatening seizures. He had a seizure last September that nearly killed him. I’ve never been so afraid in my life. He seized for over five hours. He was placed in a medically induced coma and intubated. His brain, as well as his body took a serious beating. His body recovered fairly quickly, but his brain is still healing. This will never be over for Travis, it’s a lifelong process. We can only hope that he will have smooth sailing from here out.

Written by Travis’ mom, Beth

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