A quick update from one exhausted momma

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Sometimes no news is good news and sometimes no news means I'm a tired Momma. It's been a long week, long weekend, and long day. I'm too tired to write much but wanted to update to all of you incredible people caring about our girl. The good news is we are here back in 5200 and have begun the "big guns" Immunotherapy today. In round 2, she is getting high dose IL2 in which she got in low doses last week out patient in her little fanny pack, in addition to the Unituxin infusion which she received back in round 1. Supposedly, this is a tough round on these kids. We had an NG tube placed in her nose to start the morning off, which is no way to begin your day or stay but it needed to happen in anticipation of super high fevers in which she will be feeling so lousy most kids stop eating. The NG tube allows them to feed her formula slowly to help sustain her and help her tolerate this treatment a little better. Our girl was not happy about this but it was explained to her why and eventually she came around to accept it. With that said, she has eaten like a champ today and continues to take all of her oral medication without issue which shocks and awes all the nurses here.  And besides some anticipated blood pressure issues which caused us to stop her infusions for a little while in order to address them, she's had a good day today tolerating everything. I'm happy to report ZERO PAIN unlike the first round. We have the morphine going in the correct dose off the. Att and so she has been comfortable all day. After the trauma of the NG tube placement, she played and socialized and came back out of her little shell.

Brian and I can't remember a time we felt this exhausted when staring a round. I feel like we never got the chance to recharge. But never the less, time doesn't wait for you to be ready. Our girl is ready and able to keep going and keep moving so we best pull up our grown up pants and be ready for fight along side of her. I have more to write about, especially since I hadn't gotten the chance to write about 2 special god winks! More to come soon....for now I better get some sleep because our sweet warrior depends on me to be the best me I can be tomorrow. I suppose we depend on each other.




I asked her to point to the face of how she is feeling today,she pointed to Hopeful us too baby girl ❤️

Making a poster for the Rainbow Walk of Heros (more to come on this) 

The staff was prepared to startfeeds through her tube but she kept on eating all day! 


On our way in yesterday, I started recording because she was sweetly singing the song My God is Powerful...and then she made a discovery and her reaction is hilarious 😂 

Comments

  1. Kevin SweeneyApril 25, 2017 at 12:47 PM

    Zero pain, awesome. Hope day 2 is going well. She is so impressive, blowing past expectations at every turn. #charlottestrong

    ReplyDelete
  2. Lisa (Abby's mom)April 25, 2017 at 2:41 PM

    Always praying for you guys! I can't believe all of her hair! Abby and I were at Duke yesterday for a pre-op appt, and I thought I passed by your husband, so I wanted to check in. Pls let me know if you guys need anything. xoxo

    ReplyDelete

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