Kosey Strong

04/06/2026

04/06/2026

God is good. Kosey recently underwent his first 6 month MRI since transitioning from quarterly evaluations, and the results were nothing short of miraculous. The tumors have shown no change since the last MRI. We took a stroll down memory lane and reviewed MRIs from before he began treatment with dabrenfib over six years ago. This remarkable medication has led to a 70% decrease in tumor size, making them almost undetectable in his cerebellum (so, we can no longer blame his clumsiness on them, lol) and significantly reduced on his brain stem. For now, he will continue the medication, as we are not yet ready to risk potential rebound effects near the brain stem, although Dr. Felker mentioned that there is room for growth before symptoms become apparent. He just keeps on going- thanks sincerely for continued prayers over the last EIGHT YEARS (can you believe it- discovered 4/12/18)

02/18/2026

It has been a big week around here 💚

Kose turned 16 on Valentine’s Day, wrapped up varsity basketball playoffs (tough loss last night but they played their hearts out), and because it’s finally nice out… they’re already back outside playing again tonight.

And today he passed his permit test — officially on the road 🚗
We were not emotionally prepared for that… but he’s surprisingly really good 😅

Watching him hit these milestones means more than we can probably explain. We’re just really proud of the young man he is — resilient, positive, and always ready to keep going.

Thank you to everyone who has supported and cheered him on along the way. It truly means so much to our family.

Happy 16th 💚

10/01/2025

MRI, Clinic and Echocardiogram day for Kosey. ❤️

Update: tumor on brain stem is stable. Continuing the oral chemo med. I believe if it’s not broken don’t try to fix it. Scaling back the MRI’s from every 4 months to every 6 months.

02/13/2025

Hard to believe we’ve been going here for almost 7 years. All is well. Tumor is stable and echocardiogram is perfect. Thank God we live in a time that has the life saving medication he takes. Thank you for all the continued prayers and love.