Clear Scans!

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Charlotte's MIBG and CT results are in! Her scans show no evidence of disease. We are still waiting on bone marrow biopsy results but Dr. Driscoll is confident they should reflect her scans and also be clear! We feel like we can take first deep breath in a long time. We are so grateful. Grateful for your prayers, for the medical team, for our family especially Schuey and Neal, for all of our neighbors and friends and village, for Charlotte's response to treatment and her beautiful spirit blossoming in spite of it all, for Gods grace and mercy and love.

Our baby girl has had a long day here at Duke as she is having many different assessments performed today. We have spent the entire day at the hospital for 3 days now taking all the steps required to begin the next phase of her protocol: immunotherapy. She's currently sleeping peacefully in the stroller as we finish a once a month prophylactic infusion she needs. As I watch her sleep, I am so happy that SHE has this victory. I'm so happy that she gets the simplest reward of getting to go home later today and be a kid. To play with her siblings and be with her family. It's really all she's ever wanted. But her dreams will and can get bigger...if she wants. Because we can keep going so that she has the chance to grow up and dream whatever her little heart desires.

Daddy came for a little while today and helped her conquer one of her fears: the pulmonary function test. She has to wear a mask and breath as hard as she can to measure lung output. Today was the first time she was able to do it without hysterics and passed with flying colors. She has grown and matured beyond measure

A little music time as we wait



Resting like an angel here on earth

Saying goodbye to Our Rocks. Nana Schuey and Poppy are heading back home in their RV to Arizona after being out here with us for 11 months!

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