On the night of October 25th, our world changed. We took Katie Rose to her pediatrician and was told she had a bulging fontanel. We immediately went to the hospital, thinking she was only getting a shunt put in, not knowing what we were about to hear next. Katie Rose was diagnosed with congenital glioblastoma at 4 weeks old. Her doctors weren’t sure if she was going to survive the night because her tumor was so large, with so much fluid on her brain. She had a partial brain surgery to remove part of the tumor and is going through 10 rounds of chemo to reduce the remaining tumor. Her tumor has an NTRK mutation, which means she will be on Loxo for a year after her last round of chemo. Katie Rose is such a miracle baby. She has surpassed all her doctor’s expectations of how she would handle chemo and side effects. She is one strong, tough little baby!
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