On February 15th, 2021, after our family was dealing with a bout of Covid, 8-month old William woke up happy and active as usual. At 1pm, 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 7pm 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 then 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, rounds of antibiotics … a seemingly endless set of tests that all came back inconclusive. After 5 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 3 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 9th, 2022, William underwent a 5-hour anterior temporal lobectomy, where his entire right hippocampus that included the tumor 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 3 years old now and goes to school, takes a creative movement dance class, and lives his life vivaciously.
We know William’s wish is for all kids to have a second chance at living their lives fully, uninterrupted by tumors and disease. We want to raise funding for research to make sure that kids can go home and be kids again. We wish for all parents and families of children with brain tumors to have the supports they need for themselves and their child. Please help us give these babies, toddlers, and kids a chance to live beautiful, healthy lives like we are so lucky for William to have. Thank you so much for your support!
I am uniting with others to make a difference in the fight against brain tumors. I am passionate about this cause, so I’m taking action. I need your help in this fight. National Brain Tumor Society will not rest until a cure exists - but more needs to be done. Please join in my effort!
