Charlotte's Journey

Today in 2019, was probably the hardest day of my life. You might have thought that would have been the day she was diagnosed or maybe that scary time we had during Charlotte’s transplant, but it was today. We snapped this picture below waiting for Charlotte’s doctors to come into her examination room during her standard check up at Duke. Mere minutes later, we saw more than the normal 4 feet in front of the door (the oncologist and NP that would see her). When the door opened and child life was there—Brian and I instantly knew. Child life had come to distract Charlotte so we could talk to her doctors. The world went into slow motion and I don’t know how I didn’t hit the floor if I’m honest. Brian’s face instantly drained of color. We knew immediately her scans had shown her disease, her cancer, had returned.  After all she had been through, all we had seen, all we had survived as a family…this day drained the hope out of me and I can still have a visceral response remembering it. Of c

I miss writing here. There’s a lot I wrote in this space and a lot I think I didn’t. Some of the “didn’t’s” were because I was afraid of putting something there, out loud, even if just in writing that might make it true. One of those things I have recently thought about as I was getting Taylor’s old hand me downs out of our attic for our Charlotte to wear this summer. I remember a time where I put Taylor’s clothes aside and I would cry. Privately, up in our attic space we have. I cried to God that if I only could have one prayer answered, could it be that Charlotte would wear these one day? Because then that would mean she is 8. It meant she got to grow up. Hand me downs were so hard for me. It made me face a fear that she wouldn’t get to wear them. That we could lose her. That I would be faced with a day of seeing them again only to donate them to another child who gets to live. And now fast forward to today. There are parents facing that reality. And we didn’t. Her story still being

 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