Calynn became severely symptomatic on her 2nd Birthday. Her eye forcefully turned inward, her facial expression became delayed on that side, her balance became very uncoordinated and she struggled to walk. It took just over a month and a trip to the ER to diagnose her with a brain tumor which eventually we would find out is AT/RT.
Since Jan 31 we have been hospitalized. We had a resection on Feb. 5 that removed roughly 95% of the tumor. We waited for her to heal and started the Boston Farber protocol on March 9.
I am happy to report as of April 13 the tumor is gone. We still have 47 weeks left of chemo/radiation. Caly has the SMARCB1 gene so we will continuously monitor for new tumors.
Follow her journey