Big 2 weeks for our warrior

 Starting today, Charlotte has some big appointments. We start off at Duke for 3 scans over today and tomorrow for her routine disease evaluations. Then Sunday, we leave for NYC for appointments there. She will have a 4 location bone marrow biopsy and the 7th shot for the Neuroblastoma Vaccine trial. We actually do not know if we are wrapping up this trial at this appointment or if she will be offered a continuance as we hope and pray for. Charlotte is doing amazing but she is still in the window for reoccurrence and we want to do everything possible to help continue to keep her clear. So, my anxiety is at a high as we await what will be possible...of course we need these scans to be clear first. I wish we felt at peace and could welcome the finality of finishing this clinical trial once again. But we simple do not and cannot. We are also under discussion about arranging a consultation with another Neuroblastoma expert who has just relocated to Levine’s Children’s hospital in Charlotte, NC as they are running some clinical trials aimed at maintenance foe Neuroblastoma and we do not know if they would benefit Charlotte at this time but we feel we need to do our due diligence in learning more. The team at MSK has recommended that after this appointment, Charlotte should see their survivorship team which manages long and late term side effects that could surface in children who have undergone treatment such as Charlotte. We have had one of these appointments once before and I remember bursting out in tears when they referred us onto their long term care team! I remember thinking how badly we wanted her to be a member of anything with the term survivorship associated with it! 

And look at her! Next week marks her 5th anniversary of diagnosis! 5 YEARS fighting on and off—living with it, amid it, and inspite of it! Chasing the rainbows beyond the storms. I don’t need appointments with survivorship doctors to remind me what a survivor she is. There are times more then others, where Brian and I NEED to visualize her out in the world doing what she loves, far removed from treatment and scans and worry and fear. You can often find Charlotte drawing(pic above is MLK giving his I have a Dream Speech), singing, and playing the piano. She has an artists soul and has found her peace in creating art and music. Who will she become as she grows? Brian and I will continue to do everything within our power to help to get her there❤️🌈

Thank you for all the continued love and prayers that surround our baby girl and our family, village. We expect results by Thursday sometime and will update then.