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May 19-25

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Today we were admitted for round one of immunotherapy. After being gone from Children’s for 8 months which feels like forever ago, but at the same time it feels like we never left, it was nice to see some familiar faces. One of Aleigha’s favorite nurses Anna stopped in to see us. Aleigha didn’t remember her, but she warmed up to her right away. Before starting immunotherapy she had to receive some premeds, Benadryl, Zyrtec, and Tylenol. She will receive a 10 hour drip of Dinutuximab. They need to do vitals every 15 minutes for the first hour of infusion, after that it’s every hour. During the infusion she can have nerve pain, retain fluid, and have congestion. They started the infusion around 230. After about 90 minutes of the infusion, you could tell Aleigha was uncomfortable and in pain. They are giving her morphine and ketamine to help with pain. We can also give her a morphine pca if needed. She slept most of the afternoon. When she was awake you could tell she was high on pain meds and was saying some weird stuff. My favorite was when she was yelling at Tate and he wasn’t even here.

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