Charlotte's Journey

 We have clear scans!! There is still no evidence of disease!! Thank You God, thank you Duke, and CHOP, and MSK, and modern medicine, and our amazing village of family and friends and prayer warriors. It is impossible to explain the relief we feel. I know I tend to clench and hold so much in because as I type this I have a splitting headache. I’m ready for the release and the breaths and all the sweet days yet to come for and with our girl, our family. Monitoring requirements have us scanning again in 4 months, which puts us into June! Today, so many people who helped care for Charlotte were at Duke today and she was in such good spirits they got to visit with her and enjoy her. She was chicken noodle soup to their souls. They have such a tough job caring for these children. Tough, but amazing. And seeing Charlotte is truly such a joy to each of them and speaks to the important work they are doing. After we finished up in clinic today, after her 3rd day at the hospital, Charlotte ask

It’s scan week. This is the longest stretch we’ve gone between scans at 4 months since her last scans. She has scans tomorrow and Wednesday with clinic Thursday. You have been here with us many times. I wish I could say it’s getting easier, but these routine scans are not routine for Brian and I. For us, it means facing her cancer. It means facing our worst fears. For Charlotte, it means she gets poked, gets injected with radioactive tracer, she gets sedated and put to sleep, she has long days at the hospital, she under goes more toxicity, she misses preschool and her class Valentine’s Day activities, she misses her dance class, she misses gymnastics, she comes home with an IV in her arm, she asks questions..so many questions and we revisit her reality again, helping her understand her disease and what she is fighting. Normal, sweet life, interrupted. I guess I could internalize these realizities and feel bitter or burdened or anxious but you all know me by now...I MUST find the posi