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William’s Journey

Published on August 28, 2023 in Share Your Story

Guest Author: Alexandra L. in New York

On February 15, 2021, after our family was dealing with a bout of COVID, 8-month-old William woke up happy and active as usual. At 1 p.m., we noticed he started staring off into space and was very quiet, which, if anyone knows William, was very odd. He wouldn’t eat and then started to vomit, so we took him to the pediatrician, who said he’s probably contracted COVID like the rest of our family and to rest and get plenty of fluids.

We went home, and William was super sleepy. We knew something was strange, and at around 7 p.m. that night, he began to have a twitch in his eye, which quickly started to turn into shaking and twitching all over one side of his body. We immediately rushed him to the ER.

When we arrived at the ER, they had a little trouble getting him to come out of the seizure, and when they eventually did, they took him for a CAT scan just in case something was wrong. After thinking it was just a febrile seizure, we were told the words that no parent ever wants to hear, “The scan came back abnormal. He has a lesion on his brain.”

Our hearts sank. We were rushed to Cohen Children’s Medical Center, where William underwent multiple MRIs, blood tests, a lumbar puncture, and rounds of antibiotics — a seemingly endless set of tests that all came back inconclusive. After five days isolated in the PICU due to COVID, William was stable and hadn’t had more seizures, so he was discharged, put on an anti-seizure medication, and told he would be monitored by MRI scans every three months to see if there was any change or growth in the lesion. His neuro team thought it was probably cortical dysplasia, or a birthmark, on his brain.

We brought William for regular MRIs, all showing the lesion remained the same size and shape. Fast forward to a scan in June 2022, and we received a phone call from his neurosurgeon saying the lesion had grown and changed shape. He now believed the lesion was a low-grade tumor.

Having already had what we thought was the worst day of our lives, that news knocked us for a loop. We took some time to work with his doctor and determine the best course of action, and we knew it had to come out before it grew into places in the brain that were inoperable.

On December 9, 2022, William underwent a 5-hour anterior temporal lobectomy, where his entire right hippocampus, which included the tumor [diffuse infiltrating low grade glioma], was completely removed from his brain. Miraculously, he woke up the same kid he was before he went to sleep for surgery. His personality remains unchanged, and his speech, motor function, memory, and cognitive functions work beautifully. We are so unimaginably lucky to have found his tumor so early. He is almost three years old now and goes to school, takes a creative movement dance class, and lives his life vivaciously.


Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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