Bella’s Journey

Isabella has been a fighter since day one. Born on August 10th, at 30 weeks and a day, she spent 63 days in the NICU. Her lungs were not fully developed and took a little while longer so she came home on 24 hour oxygen. After about a month and a half, all of her doctors decided she was able to be off the oxygen and live a tube free life.

That didn’t last very long. 3 months later in April, we noticed she was starting to act lethargic. After a few emergency room visits, she was diagnosed with Covid. We were scared out of our minds. Bella went from a happy go lucky baby to lethargic and barely eating and when she did she couldn’t keep food down. Only a day later we took her back in when we noticed her soft spot…hard and bulging. We were immediately rushed in the back surrounded by 15 doctors and nurses where it was determined that she had been having seizures due to the pressure in her skull. With an MRI, doctors discovered my worst nightmare, an atypical Choroid Plexus tumor that was creating too much spinal fluid crowding her brain. Bella was sedated and intubated and prepped for a helicopter ride to UCSF in Oakland. Within an hour of landing, Bella was in surgery to place a drain for the fluid. Mom, dad, and a team of neurosurgeons then sat down to discuss the tumor and the best way to remove it. The following day, the tumor was removed successfully and we started our recovery journey. We spent a total of 18 days in the PICU recovering with several setbacks.

19 days, an NG tube and some wicked looking scars later, we finally got to be home and reunited with big brother! Two more weeks of stress induced anxiety, we got the call from her tumor team stating they had finally diagnosed her tumor as the big C word: Carcinoma. They only had two other documented cases they could find of her age and type of tumor and both have had a recurrence of the tumor within a year that needed to be treated with chemo therapy. It has been a long long journey with many more years of MRIs and treatments to come but as I said, we’ve got a fighter on our hands and we’re ready to fight this all head on.