Adventures amid our duties

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Yesterday was a day full of amazing memories built somehow in a place and space we wish we didn’t need to be but somehow are also so grateful to be. It’s a strange feeling , hard to describe
I write this as we sit here waiting for her bone marrow biopsy. We have become professional “waiters” for sure.  I’m not sure I could encompass yesterday in words if I tried. But, I am me after all, so I will try🤪. It started at 4:30am, Charlotte needed to use the bathroom and I felt her burning up. Fever was down to low grade by appointment time 😅 so I suspected a simple virus. At clinic, tests they ran confirmed just upper respiratory virus (like a cold called coronavirus) so we are able to proceed with our procedures. She’s asymptomatic and feeling fine except for soreness at the injection site and running a low grade fever but you’d never know it! Y’all, she’s had me running all over town! Walking, park, Cuban restaurant, cafe for hot cocoa, nail salon, and finally around 5pm when I dragged us back to the Ronald MacDonald House to try and relax before dinner...she got wind of a Valentine’s Day party a couple blocks away being thrown by a local charity, Candlelighters NYC,  for pediatric cancer families at MSK. So, she dragged me there where they doted on her and whisked her away to play while they treated the moms to champagne (virgin but still fun!) and professional make up artists and a table full of “shopping” and gifts and dinner...These NYC organizations are incredible. They make my wheels turn with how can Brian and I maybe bring some extra “magic” to families going through the unimaginable at our home hospital of Duke one day?   Our girl is very sore today as the vaccine causes a reaction at the site, which is right in her little chunky thigh. It also generally causes a low grade fever. Her labs and chemistries looked good yesterday. She is beyond amazing to us and it may not read as so—but I’m kinda speechless about it all❤️🌈Thanks for loving our family and taking your time to pray for our girl as we await the bone marrow biopsy results. And thank you God for giving us this time to make some beautiful and special memories, at times together and at times apart, sometimes where we’d like to be and sometimes not. I read a quote yesterday that stood out “Love the ones God gave you. For one day, he will want them back.” And even though we plead with God daily to let us keep her always, none of us really know what is in store for any of us so I guess we should just keep truckin’ along the best we can trying to give the best we can to the ones we love while we still have them. God bless you all

On our way for round 5! 

Charlotte sees a rainbow in the window

Drums at RMH



One year ago vs today! One year ago we left to head up to Philly for radiation. Today, we are in NYC whole Brian and the kids are in Philly for the Super Bowl Parade! Theymet up with Pops! Go Eagles 🦅 (and Refskins😉)

Watching fish as we wait and wait and wait some more. We were here for 4 hrs today and in isolation due to a stuffy nose and low grade fever. We have become professional waiters 

Out exploring! Park time



Mommy is tired. Charlotte is not. The girl has such an adventurous spirit. I think she knows this beats being hospitalized any day



Nail time!

Candlelighters NYC three an amazing Valentines Day party for the families here. They spoiled us for sure.


Us girls with our make up on thanks for Candlelighters NYC 


Eagles Parade in Philly! We wish we could have done this all together as a family but the silver lining...Brian got special memory making time with Taylor and Parker and his dad celebrating their Eagles 

Pops and Brian

Charlotte’s new favorite game is Go Fish. We play it almost every day, or a version of it. She’s created her own game here with some cups she decorated and silver metallic stars and cards...I still don’t know what she’s talking about but we play it 🤣

Playing with Charlotte. Mommy made the Ferris wheel and Charlotte made the vehicles with the magnetiles, another new favorite thing of hers. 




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