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November 4, 2018

Updated: Dec 22, 2018

No new information. She’s awake and is interacting. She just wants to be held. She’s not moving her neck, but by the end of the day at least showed a little interest in coloring. The speech therapist worked with her to see if she can eat. They are involved so they can listen to her throat when she swallows. The concern is food or water going into her lungs due to where the biopsy was performed. She was approved for purees but not liquid since she was struggling to swallow. They will try liquid again tomorrow. Today she had about 6oz of applesauce. We are being transferred out of the PICU but there is debate in where we’re going. She doesn’t need the expensive room because she is currently stable, but since no one knows what it is, they’re not sure if they’re transferring us to neurology, general pediatric, or oncology. I keep trying to fish for reassurance that this isn’t cancer, but I’m just not getting it from anyone. And Dr Google has made me feel expectedly worse. They can’t guarantee complete pathology results tomorrow but they expect we’ll get something. Since it’s unusual, they said it could require a few more days for dyes and testing. I am trying to stay positive but my optimism was mostly depleted watching my dad’s battle for the last 6 months. I just can’t see a outcome that isn’t cancer. Please continue to pray until we hear results.


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