Charlotte's Journey

 After a long weekend with no news regarding Charlotte’s scans, a small mercy came in the form of a quick message through Charlotte’s MyChart with Duke saying the preliminary results look good and scan report is just delayed. All of her labs and check ups look good! We are confident we can celebrate another ALL CLEAR with no evidence of Neuroblastoma. She gets another 6 months to JUST BE! Thank you God!  Standard of care is to monitor via the MIBG scan for 5 years after treatment. This was Charlotte’s 3 year off treatment for relapse. We expect to scan 2x at 6 month intervals this year and then one more in her final 5th year. Then her annual check ups are for long term care alone and they stop looking for Neuroblastoma unless we see any signs. This can be her story. And the waiting was a reminder that everything is God’s timing isn’t it. Like children, we want what we want when we want it. Waiting, patience is hard. We are God’s children and I smiled thinking how our immediate needs we

7 year ago this week, we began this road with Charlotte. These pictures were the last ones taken before we learned what she was fighting. We drove to Duke Children’s Hospital on orders from our pediatrician after a month of weekly visits. Soon the doctors would tell us it was an aggressive cancer, Neuroblastoma, and we would learn it had already metastasized to her bones and bone marrow. Treatment plans, survival statistics, surgical procedures, side effect paperwork, social worker and child life visits to assess our needs with our other children and our finances, a flurry of activity, little sleep, and a completely blurry time of fear in my memory. And she suffered. We watched her suffer and would watch her suffer more over the course of that year and a half, and then again when her cancer returned. And we watched other families suffer and struggle. We watched the strength of these families and these kids like Charlotte who often tried to smile and find some playful joy. We watched so