Charlotte's Journey

This update will be short and sweet because I'm not sure I could accurately capture this emotion even if I tried and honestly we are running on fumes at the moments due to physical, emotional, and mental exhaustion. However, results are all in and CHARLOTTE IS CLEAR!!  Her bone marrow biopsies are clear and the team here confirms all of her scans are clear. Charlotte is in complete remission and ready to move on to their Neuroblastoma Vaccine Trial for kids in remission. Thank you God! Thank you Village! I have so much I want to say and write but at this moment there is no need. I just want us all to bask in this glory and take in this moment because our girl has done it. And now, we look towards making sure it never tries to return to take away anymore of her childhood. She will keep moving, keep going.❤️🌈 (More about our adventures up here in NYC when I can muster the energy and figure out why I'm having trouble uploading photos).

Charlottes scans from duke ARE CLEAR! No evidence of disease on any of the 3 scans. We still have bone marrow biopsy results to get next week when we are up at Sloan Kettering because they require a more extensive biopsy in which they will themselves perform in order to enter their vaccine trial, but for today WE CELEBRATE!! She did it. There are no words I can find. Thank you all. Thank you God. I can't seem to get any pictures or the video of her ringing the bell to upload at this very moment but I will come back and add them! I just wanted to update all of you as soon as I was able to sit down and breath and I knew you all wouldn't mind my mush-emotional-tired-brain and all🙃😄 Ringing the Bell (video link): https://youtu.be/vb8-dATqrJ0

After a second day in a row of scans today at Duke Childrens, Brian and I were feeling restless and took a long walk during Charlotte's long MIBG scan (which can take up to 3 hrs). Towards the end, we made our way back to where Charlotte would be recovering so we could be there when she woke up. We had begun to see musicians setting up to play across Duke Hospital. Brian needed to charge his cell phone so I said "Honey let's sit here a moment and you can plug in." God must have felt what was in our hearts and knew we needed a rainbow because next thing we know a violinist picks up her instrument and starts playing "Somewhere over the Rainbow" directly in front of us. Gave us the chills of the warmest kind helping to chase away worrisome anxious feelings and replacing them with a sense of calm and peace. We wanted to share this rainbow in the form of a song that we heard today with all of you praying for our baby girl😊❤️🌈. The wait is hard, but tomorrow wil...

I keep wondering if this is how it will feel before every scan from now on. To describe the sickening anxiety is impossible. So I can't. For past scans and biopsies, there was always more treatment still to come. If for some reason the results did not reflect our hopes, then we could have always said "Well, that's ok, she still has more to go! Maybe next time." But this time, there is no more to go. This time, we go into these scans as the culmination of therapy. This time, we need the cancer gone. We need our girl declared NED (no evidence of disease) and in complete remission. Charlotte can keep going, keep moving as we pursue the Clinical Trial for the Neuroblastoma Vaccine up at Sloan Kettering Memorial in NY. We believe in research supporting the need for more during the maintenance period for the type of cancer Charlotte has. We know what we were up against, we saw what she faced, we witnessed her beat it down, and now we understand what else is at stake. Rela...