Avett's Avengers

06/10/2026

Avett had a great time at Camp! Camp Claphans - JD Mccarty Center ❤️

06/05/2026

Avett's latest MRI results appear to be okay overall; however, there does appear to be a small area of concern that is more prominent than in the last MRI. This requires attention on the following scan. This is not what we were expecting, and are obviously concerned. We are going to stay positive for Avett. He has a few camps coming up that he is very excited about, and we want him to enjoy his summer. We see his oncologist in July, and we will formulate a plan of action. As always, thank you all for your support, and please continue to keep Avett and his family in your thoughts and prayers. 🩶💛🩶

06/03/2026

Avett has his 6 month MRI today. This will be our first experience with the VNS device and an MRI. Please keep him in your thoughts and prayers. 🩶💛🩶

05/07/2026

05/05/2026

Avett’s surgery went well and he is at home and resting. Thank you for all the thoughts and prayers! 🩶

05/05/2026

It is 7:15, the surgery scheduled to start at 7:30. Avett says “30 minutes”… I say, well about 15 minutes. Avett says…. “Tomato, tamato….” He has us cracking up. 🍅

He just went back for surgery. Please keep our funny guy in your thoughts and prayers today. 🩶

05/01/2026

Avett will has an upcoming VNS surgery scheduled next week. Please keep him in your thoughts and prayers! 🩶

“Vagus Nerve Stimulation (VNS) Therapy is an FDA-approved, add-on treatment for drug-resistant epilepsy that uses an implanted device to send mild electrical pulses to the brain via the left vagus nerve, reducing seizure frequency and severity. It is commonly used for patients over age 4 (or 12 for certain models) when medication is ineffective and traditional surgery is not an option.”

12/18/2025

Today marks 11 years since diagnosis day for our sweet boy. We take time to reflect on how fortunate we are and how thankful we are for OU Children’s Hospital and their amazing network of doctors, nurses, and specialists. And for the amazing support from our families, friends, and all of Avett’s Avengers! 💛 Thank you!

12/13/2025

If you see this guy around, don’t worry, he didn’t break anything! This process is a type of serial casting.

“Serial casting is a gradual, non-invasive process using a series of casts, changed weekly, to slowly stretch tight muscles and increase joint range of motion, often for conditions like Cerebral Palsy or brain injury, helping improve movement, gait, and function over several weeks.”

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12/09/2025

We received great news regarding his most recent MRI:

“Residual enhancing tumor near the resection cavity and in the left ventricular trigone are stable in appearance. Left scalp pseudomeningocele has significantly decreased in size.”

Thank you for all the thoughts and prayers for Avett!

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