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.
Calynn had a resection on Feb. 5 (2020) 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 (2020) 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.
Update Dec 29, 2022 - Calynn's 5th Birthday
Calynn has officially been off treatment for 18 months. We are grateful for every single day and are really enjoying our time together at home. Caly has therapy 3 days a week for PT, OT, and Speech therapy. It’s wonderful to watch her achieve her goals. We call therapy “school” and she is excited everyday to go.
The last few weeks She has had some possible neurological issues and several red flags that are very alarming. Caly had an emergency CT Scan and thankfully no critical issues were found. We are currently working with her team to see what may be causing these issues.Hoping it’s just related to later side effects of chemotherapy or a recent illness. Caly will be having her scheduled maintenance MRI within the next 2 weeks. We always appreciate your prayers.
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