Emmalyn has gotten so many count checks!  Now she likes to fill the vials of blood herself!  After getting accessed, she helps to fill the vials and shake the ones that need to be shaken. It is nice to see her adapting and becoming independent. 

Today was a big day!!!  Her feeding tube was removed!  She was so brave!  She is in some pain and is trying to protect the area as much as possible. This will drain for about a month and take just as long to heal. We are so proud of how she has handled all the pain and discomfort!  Unfortunately she was not happy afterwards and I wasn’t able to get a picture to celebrate. Maybe one day soon when she is feeling up to it. 

Emmalyn has been through a lot the last year, but the last couple months have been just as hard in a different way. Her body is destroying blood, making her tired and ache. Scar tissue from radiation is compressing the tubes in her ear causing fluid buildup, which will be a lifelong problem. Because of the location of the tumor, she will always have lots of drainage from her nose. Right now she has so much, her cheek is swollen and she has discharge coming out of her eye. She is starting to become more active, which makes her more tired. She wants to do so much, but her body just can’t keep up. She is exhausted from traveling to the hospital twice a week. She is doing well despite all the things weighing on her right now. We can tell her spirits haven’t been as high as usual. We believe she is tired, worn down, and ready to decrease the amount of doctor visits and hospital trips she has to take. We hope this issue can get figured out soon so she finally enter into a stage that feels like “after treatment”.