In December 2020, I took my 9-year-old son for his yearly physical. We had no concerns and expected to be in and out in less than 45 minutes. During the visit, they checked his hearing and found hearing loss in his left ear. We even joked with the doctor, saying, “Oh, that’s why you don’t listen to me,” thinking it might just be an ear infection or water in his ear.
The doctor recommended we see an ENT. A few days later, the ENT told us that my son was completely deaf in his left ear and would need a cochlear implant. I asked him to slow down — I wasn’t ready to talk about an implant until we knew why my son suddenly lost hearing in one ear. The ENT didn’t seem to take me seriously, so I called our pediatrician and demanded an MRI. On New Year’s Eve 2020, we got a same-day MRI. On the way home, I got a call from the pediatrician telling me to come in immediately for the results. In that moment, I knew something was very wrong. The MRI showed a large brain tumor with fluid around it.
My son had emergency surgery at Duke that same day. The operation lasted 8 hours. The surgeon was able to remove 90% of the tumor, but the remaining 10% was on his brain stem and too dangerous to remove. Six weeks later, we did a follow-up MRI to see how things were healing, and we received devastating news — the tumor had grown back. My son started chemotherapy right away and went through a full year of intense treatment. Today, he has been stable for 3 years. I share this story in the hope it helps someone else. Take your children to their yearly checkups, even if they seem perfectly healthy. That physical, our pediatrician, and the neurosurgeons saved my son’s life. His next routine MRI is coming up next month, and we are hoping it shows the tumor is still stable. ” title
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