Day 2 and Charlotte’s alter ego

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Meet Barlotte, Charlotte’s alter ego today🤣THIS KID! She blew me and the team away today. After recovering from the intense 3F8 infusion, she was ready to play and goof off! A group called Mustaches For Kids Long Island was in the MSK playroom today and Charlotte joined in😂

Each day she receives this treatment, no one can know what to expect and so we are so grateful when she has an easy recovery like today. She has been able to verbalize what she is feeling, and although the location of the pain varies each time she receives this therapy, she is able to describe that it feels like she is on fire. This is perceived nerve pain caused by the immunotherapy. Monday, it was her stomach and buttocks, today it was her mouth and arms and legs. Besides various medications given before, during, and after (and there are TEN of them...) to help manage side effects, simple cold ice packs are her best friends. My job is basically popping and placing ice packs wherever she screams for me too (today I juggled 8 of them...) and to rub and massage putting pressure where she screams for me to, helping to place the blow by oxygen near her head, helping her breath and comfort best I can.

I left today feeling like I could sleep for 8 hours, but Miss Charlotte, aka Barlotte, was ready to go play🤪❤️🌈She defines resilience #charlotterocks #charlottestrong #barlotterockstoo

Hello Barlotte


😂


Hope this video comes through. There is a new way they prompt me to upload and I’ve meant to ask friends and family if they are posting ok as I know many of you dot check this webpage but have signed up to receive emails instead


Asking to work on her Kindergarten assignments while waiting for infusion today:) Her sweet teacher sent a packet with a note that said “complete any, all, or none❤️“

MFKLI (mustaches for kids Long Island) today in MSK playroom 

Her amazing teacher Ms Miller also sent lollipop notes for each day she is absent

Ice packs and swooshing ice water in her little mouth post therapy today as she rests to recover

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