Our Sweet Eli – An Update

We’ve been sitting with this for days now, trying to process everything ourselves before sharing. On September 27th, our sweet 5-year-old Eli began having what we later learned were absence seizures. He would become unresponsive, his head would turn sharply to the left, and he’d just "check out" for up to two minutes. At first, we honestly thought he was just being silly (he’s 5, after all), but when it started happening more often, we took him to our local ER. They suspected seizures and put in a neurology and cardiology referral.

At that same appointment, they also found an irregular heart rhythm, later diagnosed as Wolff-Parkinson-White Syndrome, a condition that can lead to serious cardiac events but can be treated down the road with a heart ablation.

Looking back, we now realize those rapid eye blinking episodes he had about a month ago may have also been seizures. Again, we chalked it up to typical 5-year-old behavior and everyone blinks

The next day, September 28th, things got worse. The seizures were coming every 1-2 hours. After one episode, Eli even vomited, and that was our final straw — we rushed him to American Family Children's Hospital ER.

While there, Eli had a severe seizure where his oxygen levels dropped into the 50s. He needed oxygen support immediately. That’s when they got him hooked up to an EEG (a test that monitors brain activity using electrodes on the scalp) and confirmed he was indeed having seizures.

They started him on seizure medications:

Keppra: didn’t stop the seizures, and brought on some pretty tough behavioral side effects.

Depakote: also didn’t help much.

Lacosamide: finally started to reduce seizures a bit, mostly happening in the evening now.

During all this, Eli was confined to a bed with wires hooked up to his head, unable to move around for 4 days. He did his best — lots of screen time, of course — but it was so hard seeing him like that.

While waiting for an MRI with sedation, we got a call saying they wanted to scan both the brain and spine.

The MRI results came back, and they found a 4 cm x 4 cm mass in Eli’s right frontal lobe.

Yes, our 5-year-old has a brain tumor.

A neurosurgery resident walked us through the scans and said if he had to choose a place for a tumor, this would be one of the “better” locations. The main neurosurgeon visited us that night to explain everything. The surgery is scheduled for October 7th, because we need to wait 72 hours for the Depakote to clear his system. On a positive note we were discharged for a couple days

The tumor is somewhat close to the pre-motor area of his brain, which controls movement. There’s a risk that he may have muscle weakness after surgery and may need inpatient physical therapy. They say statistically tumors in this area low-grade, but we won’t know for sure until it’s sent to pathology.

We’ve explained everything to Eli in the most 5-year-old way we can — telling him there's a “big bouncy ball” in his head that’s making him sick and needs to come out. He’s been asking a lot of questions. He told us he’s scared. We are too.

We sleep with him every night now, terrified of SUDEP (sudden unexpected death in epilepsy), which is a real risk with nighttime seizures.

We carry a rescue seizure med everywhere we go.

We’ve had to keep him home from school, avoid fall fun activites to prevent illness before surgery, and completely modify our lives to keep him safe.

We’re struggling to get him to take his meds — he hates the taste — and keeping a wild, adventurous 5-year-old from climbing and jumping is… impossible.

We don’t even know yet if this tumor is cancer.

If the tumor is low-grade and completely removed, the plan will be to monitor him with regular MRIs and keep him on seizure meds for up to 12 months. If it's high-grade, we’ll be talking about chemo and radiation.

Alex and I are absolutely heartbroken and exhausted. We're trying not to spiral into the "what ifs," but the thoughts creep in — Will he be okay? Will he have a normal childhood? Will we get to see him grow up and sit in the front seat or have a family one day?

This isn’t fair. No child should have to go through this.

We’re both on FMLA, which protects our jobs and insurance, but doesn’t stop the bills from coming. We missed all of last week except for 13 hours combined, and we’ll be out next week for surgery too. We have another child who still needs love and care, rent, insurance costs, and day-to-day life to keep afloat.

This weekend, we’re just trying to soak in the last bits of normal before things change forever.

Please feel free to reach out if you have questions or want to talk. I’ll also be sharing a video of one of Eli’s seizures soon to help raise awareness for what this can look like. It’s not always what you think.

A poweful reminder that health can change in an instant. Hug your kiddos and loved ones extra tight.

Please keep Eli in your thoughts, prayers, hearts — whatever you believe in. We just want our sweet, funny, curious boy back.

With love,

Amanda & Alex