Charlotte's Journey

There is something that has been laid on my heart for some time, but I felt inadequate in writing about it. The inadequacy exists because we haven’t lived it. Most of what I usually write here comes from a place with deep roots because we have lived it. After all, this blog was created as a space for Charlotte to read one day. When that one day comes, most of this will not even be a memory for her. Although still authentic, sometimes, the content I want to write about comes from a place of fear. I learn about things that may or may never BE because I always feel like the knowledge helps us prepare instead of being blind sided. But also, I want to learn about all the mays or may nots because I want to be equipped with knowledge so that we may be able to help others going through this in some way, one day. If knowledge is power then what we don’t know can’t help us. But sometimes what we know haunts us unnecessarily, so it’s a fine balance that I don’t always achieve. Back early on

3 years ago TODAY was the day Duke found the abdominal mass on the CT and told us Charlotte had cancer, although official diagnosis was still to come. I can close my eyes and go back to that CT scan. Never could we have imagined what was there making her feel so sick. I was helping to hold her arms over her head and trying to make her smile and be at ease while Brian stood with us watching the face of the CT technician. Brian wouldn’t tell me this until much later, but he watched the tech close his eyes and look away. He watched tears well up. Brian knew they saw something horrible. A short while later, our doctor came to her hospital room and closed the door behind her and told us that Charlotte has cancer. 3 years ago this week, our journey began. Today, TODAY y’all, our baby girl exudes all the grace and hope and possibilities God provided. Today, her big sister, Taylor, was the mystery reader in Charlotte’s  preschool class. Today, Charlotte shouted out “Tay Tay!!” when she sa

Today, while Charlotte showed up as Princess Aerial to a local St. Baldrick’s event as an honored kid after having been asked to speak and have her participate in a special “knighting” ceremony, many hours away there is a mom (whom I’ve met and gotten to know a little while up at MSK in NYC) who’s 5 year old son, Lincoln, who is battling relapsed Neuroblastoma and was responding well to the treatment according to his recent scans, started complaining of headaches and was having nausea. Headaches and nausea can be alarming in a child like Lincoln. The team asked her to bring him into the ER for an evaluation and the MRI revealed abnormalities in his brain along with swelling. They are awaiting next steps but the concern is that this cancer has snuck into his brain. This relentless, nightmare of a disease steals and sneaks and takes. And while our baby girl stood on stage, shy and uncertain about what the hoopla was about today, also knew that her presence today could help other sick kid