Levi was diagnosed in July of 2022 and had a 10 hour resection at University of Kentucky Hospital. He spent 11 days in the ICU there before he discharged home. We were fortunate enough to only have some mild left sided weakness from his resection so he was able to regain his strength and abilities fairly quickly and easier than a lot of kids we know. He received 30 rounds of proton beam radiation and stayed a total of 6.5 weeks inpatient at Cincinnati Children’s Hospital then came home to continue the battle from Kentucky Children’s Hospital and our DanceBlue oncology clinic. He has had 6 cycles of chemo each consisting of a 4-5 day inpatient stay and just had MRI scans that indicate good progress has been made so far. He continues to remain in good spirits, go to school as his counts allow and reminds us all that just because it’s hard doesn’t mean we have to be upset all the time.

Levi actually ended up having 8 rounds of high dose chemo and has completed 6/24 months of a clinical trial for DFMO. 

He is back in school full time but dealing with mental health struggles and occasional low lab counts due to treatment. 

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