Saturday, November 3, 2012
One long week for our Julia
A week ago today, Julia went into the hospital in Santa Rosa to address her severe reflux, weight loss and lethargy. Two days later she and her mom took an ambulance ride to Roseville's Kaiser, a facility with access to many more pediatric specialists. When she got on that ambulance, everyone still thought we were dealing with reflux, although she was clearly very ill and needing some help from an oxygen mask. Within moments of arriving at the new hospital, it was evident that something more serious was troubling Julia. She had a seizure, a spinal tap, a breathing tube, a head CT, and the diagnoses of a brain tumor within her first hour in the PICU. That night she underwent emergency surgery with the goal of removing the entire tumor. The surgeons found that the tumor was in too complex of a location to remove without more sophisticated imaging and a team of pediatric neurosurgeons, but were able to remove enough to learn its pathology: a low grade Pilocytic astrocytoma, which tends to be non-aggressive and operable. Unfortunately in Julia's case, the tumor is in a difficult location, originating from the brainstem and extending down her spinal column to her third vertebrae.
Julia has been working so hard to rest and heal since her surgery. While she has not fully regained consciousness, she has gradually been regaining her reflexes and showing more responsiveness. Some of her milestones include regulating her body temperature, breathing over the ventilator, tolerating being fed through a tube, as evidenced by several poop-filled diapers (a very welcome sight!), and opening her eyes just a crack to see who might be around. She clearly responds to her mom and dad when they talk, sing and laugh, and opened her eyes for the first time when big sister Amanda came to visit. Unfortunately, she has continued to have some seizures, which complicates her recovery.
Julia's amazing, highly competent medical team is working hard to help her recover her strength, control the seizures and heal from her ordeal so far. They hope that in two or three weeks she can be transferred to Kaiser in Oakland for the big surgery to remove the tumor. This will be a major and complex procedure led by a team of at least three pediatric neurosurgeons.
Julia and her family are surrounded by so much love and support. Grandparents, aunts, uncles, cousins and friends have camped out at the hospital over the last week. Friends and family near and far have sent gifts, prayers, and wishes for speedy healing. She has been sung to, caressed, read to, talked to and watched over day and night. She is such a strong, bright, funny and vibrant little girl, and has so much going for her even as she engages in this difficult fight.
Posted by Francesca at 9:56 PM