Sept 2021- My daughter was diagnosed at 3.5 years old supratentorial, right perennial, ZFTA Grade 3. Had GTR, was in process of getting scans a helmet fitted for radiation & they thought there was reoccurrence. So 2 months after first surgery we had to do another. Thankfully that was only scar tissue. We then did 33 round proton radiation and traveled out of state for. Best decision for our family. She had reoccurrence in the same location show up 17 months (March 2023)  after 1st surgery. We then waited & did another scan 2 months later to confirm growth. 3rd surgery followed a month later and achieved. Since it was so close to her last radiation we decided to go with oral chemo regiment and are on Cycle 10 now. This is not a cure but was hoping to create more time between. Clear scans since! 

Reoccurrence 18 months after original diagnosis. Did another surgery to get GTR and decided to do 18 cycles of oral chemo to hold off reoccurrence. 

She is a funny, caring and incredibly smart kid who loves playing sports & hanging out with her cousins. She thrives even with loss of some mobility in her left hand. She takes each doctor appt & each MRI like she's 20 years older and I'm so impressed by her bravery. 

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