Brain surgery #4

On Friday March 20th Juliette underwent her FOURTH craniotomy. She started 25 rounds of photon radiation on April 6th, that we’ve paired with a targeted therapy, niraparib, a radiosensitizer that she’ll take orally for 3 days a week.

This time felt different. Juliette is older, more mature, more aware. Our communication to her has shifted from little to none, to sharing details that matter to her, in ways she can understand. While she still is unaware that she is any different than other kids, she’s cognizant of how different events make her feel. Changing our communication to Juliette has been new, but prepping and packing for surgery felt all too familiar for the three of us.

The first 36 hours post surgery were a grind between the persistent vomiting of blood and fierce head pain every time Juliette tried to sit up. True to form, our strong, determined girl took her first unassisted steps shortly after. We made our way home on Sunday evening, March 22nd.

After a week of recovery at home, Juliette is back at school with heavy physical restrictions and started daily radiation on April 6.

While Juliette makes it look easy, brain surgery is incredibly invasion and recovery is always challenging. We like to share the moments that show her sheer determination rather than the tears, that we know will always be part of this journey.