Charlotte's Journey

 JOY TO THE WORLD! Charlotte’s scans are CLEAR of disease. When I told Charlotte, she said “Did I do a good job laying so still mommy? They weren’t blurry?” Oh sweet girl you did amazing and they were perfect🥰. We are feeling the wonders of His love and grace this Christmas. We know there are many suffering in this world through one thing or another...so if we can shine a little light, spreading some hope and faith, then maybe we have a gift we can share. God bless, happy holidays, and Merry Christmas!❤️🌈🎄🎅 Joy to the world! Merry Christmas! Charlotte’s best neighbor buddies that I mentioned in yesterday’s post, Reid and Isla. They are such blessings in her life and she sure loves them so.

 Charlotte has hit a huge milestone, village! She was able to have her MIBG scan awake and not sedated! This is a very long scan that takes about 90 minutes and she must lay completely still or else imaging is affected. There are times where the camera comes very close to her face, but the majority of the time she can turn her head and watch a movie! What this means for her is that going forward, she will be able to eat and have zero recovery that influences the rest of her day! One of her motivators, besides getting breakfast, was knowing she could go outside and play as normal without restrictions that are in place after she’s been under sedation. She said “So can I stand up on our web swing with Reid and Isla?” That’s right baby girl! Her love for playing with her favorite neighbor buddies has motivated her❤️These kids play either at recess or after school on the daily🥰She is rocking this!  As we celebrate this milestone, thank you for sending up those prayers for clear scans! Than

 Charlotte is here at Duke Childrens, drinking her contrast for her CT scan, and being a sweet goofball on Snapchat. We wanted to share that Duke Childrens is having their annual radiothon today and tomorrow! If you are able to donate via this link or text Dukekids to 51555! All proceeds go to helping this hospital make a difference for so many children and their families. We are forever grateful for the care and child life and family support services we’ve received.  Charlotte will have CT and MIBG over today and tomorrow. We hope and believe results we are praying for will be in sometime on Thursday and then we can truly take a breath and feel the peace of Christmastime. Thanks for praying for our baby girl this week.❤️🌈 https://giving.dukechildrens.org/events/radiothon

It was a bittersweet day, village. Our warrior had her hearing aid molds made today and picked out her colors. She chose nude to blend in with her skin and hair color as she decided she did not want it to stand out. They should come in next month. The good news is her hearing loss has stabilized! The aids will help her not work so hard at hearing the higher pitch/frequency sounds as well as language when there is background noise and now in today’s world: masks. She loved learning that they will be like her own AirPods as they have Bluetooth! She will continue first grade virtually for the remainder of the year, as will her brother and sister. Brian and I debated all the pros and cons for quite a while before the deadline to decide smacked us upside our heads today. In the end, we decided we have the opportunity to allow Charlotte’s immune system to FOCUS on the immunotherapy that this Neuroblastoma vaccine trial promises. We can help try to keep her immune system strong and focused on

We are lucky. I’m writing this update while watching Charlotte swim. She is so happy swimming. She is taking lessons to improve her swim strokes and learn skills so she can be on a year round swim team. This is her goal. Between cancer and CoVid19, her goals were put on the backburner at times. She has had to miss a lot of tender Kinder and first grade school moments as well as many of her favorite activities. She is not alone of course. So many have paused their own goals or plans because of one thing or another. And COVID has disrupted and complicated everyone’s lives in various ways. We know to count our blessings though...we know well enough to just be GRATEFUL we are all together and happy and healthy TODAY, in this moment in time. And yet, I shamefully admit, I feel like I have started complaining a lot.  It’s as if I joined some kind of band wagon I didn’t mean to join, absorbing the climate around us all. It is not hard to feel it. There is ALOT of negativity in the world right