Wrapping up round 3 with family time

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After waking up at 5am on Saturday morning burning up with a 103 degree fever and we treked in the bitter cold, 5 blocks to the hospital for her to be seen for the fever protocol, Charlotte was unfortunately feeling pretty bad the rest of Saturday when Brian and the kids arrived. She stayed in the room to ride out her fever and had a restful day while her siblings enjoyed some of the holiday festivities at the RMH. We played family games in the room and watched a movie and let her recover. The fever was likely from the treatment and so by the next morning she was feeling so much better!

Therefore, Sunday we got to go out and enjoy some Christmas time magic in the amazing New York City all together. We took in Rockefeller Plaza and the beautiful tree, the LEGO store, some special store front Christmas displays, and ice skating in Central Park. It was a special day and although Charlotte wasn’t 100 percent (primarily having a huge suppression in appetite), we soaked up the time here together. Because Charlotte being back in active treatment for cancer is not at all where we hoped we would be, we are still here. Still here fighting and laughing and playing and living life and all together. So at the end of the day, we are blessed and we feel it every day.

Charlotte doctors at MSK have asked for her to have an MIBG scan for the clinical trial, which we’ve scheduled at Duke for 12/18. Round 4 of this treatment is scheduled to start January 6. We of course need HUGE prayers that her MIBG scan, which is specifically for detection of active Neuroblastoma, is clear of any disease. And we will get Christmas and New Years home all together. The children are already on school break until the New Year too so we are ready to soak up this wonderful and special season. Can you also please join us in praying for the families that we have come to know and care about who will not al be home together this holiday season. They have been on my heart and mind this week as my gratitude continues to deepen and my awareness for how precious the time we have on earth really is.

We are so grateful for the continued pouring out of love all around us and for the grace of God❤️🌈


Rockefeller Plaza Tree

Santa at RMH again and kids all got to pick out a gift 

Ice skating in Central Park!

Ice skating in Central Park! So beautiful

Snuggles with daddy

Saks 5th Avenue store front is a frozen 2
Castle and window display


She loves ice skating

Bundled up to brave the cold

Flying home all together is more fun...more work
but more fun🤪


Mike and Robin Colangelo are high school friends from my hometown. They have been sponsoring caregiver meals at our Duke Children’s Pediatric Bone Marrow Unit for about 2 years now and they just shared some pictures from their Thanksgiving Lunch they provided! We have several special members of Charlotte’s village who continue to give back and make a difference in the lives of families going through the unimaginable (Greg, Loren and Casey, and Doug and Joanne Reynolds). We have THE BEST Tribe

We are so grateful. Thanks Mike and Robin❤️

Comments

  1. ppa1dayatatimeDecember 13, 2019 at 9:53 PM

    WOW, you do have THE BEST Tribe. Best wishes for the holidays together and all the best of outcomes for upcoming tests! XOXO Such a beautiful family!

    ReplyDelete

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