Josie’s Story

The Orsega family woke up one Sunday morning in September just like any other Sunday but it ended up being the start of something they never would have imagined. Almost two year old, Josie, wasn’t walking normally and they weren’t sure what was going on. They were supposed to be leaving later that day for a family beach trip so they decided to take her to urgent care after church before heading to the beach. The urgent care said she had a little fluid in her ears so they left thinking maybe that was causing the instability and headed to the beach. However, once they got to the beach things continued deteriorating and Josie was acting like her legs were made of jello. Brooke and Cash decided they needed to head to a hospital. After finding out they would have to wait several days inpatient at the hospital for an MRI, they made the decsision to head home and get in with their chiropractor, pediatrician and a specialist.

After waiting and not getting a call back from the specialist, Brooke’s gut said they needed to start over and get answers. She left with Josie and headed to Duke. After many tests and scans, it was determined that Josie had neuroblastoma as well as a very rare autoimmune brain disease called opsoclonus myoclonus (OMS). Cash was home sick and unable to be at the hospital so Brooke was alone with Josie at the hospital when she received the news that changed their lives forever.

Immediately a game plan began to be put into place to determine next steps. Josie was given IVIG for the OMS diagnosis and plans were made for surgery. During surgery the team was miraculously able to remove Josie’s entire tumor! After pathology came back, it was determined that the entire tumor was removed and no chemo would be needed. For the OMS diagnosis, Josie, Brooke and Brooke's mom flew to Boston to get a second opinion at Boston Children's Hospital since the condition is so rare. Their teams in Boston and at Duke worked together to start Josie on a two year protocol of IVIG as well as Rituximab and steroids for a shorter period at the beginning. She is currently traveling to Duke every four weeks to receive IVIG and steroids. Thankfully there have been no weird eye movements or tremors in several weeks. Josie is still going to physical therapy where they are helping her regain some of the motor skills she initially lost but they are not expecting this to be long-term.

Josie’s family loves listening to Forrest Frank together and Josie’s favorite song is Good Day. She runs around their house shouting “Me have good day!” so it was only appropriate for her shirt to capture this same joy she shares with others!