Nori and Charlotte

By -




 Every victory from one of the children we know who are fighting Neuroblastoma feels like a victory to us all. And every set back, feels like a gut punch to us all. There is a family with a little girl named Nori, who is so much like our Charlotte. First time we met her, back in 2017, she was always wearing her Snow White night gown and dancing. She too just started first grade after fighting relapsed Neuroblastoma. She too runs around happily while playing with her sister. She too grew back her hair a second time and healed from more treatment. Her laughter echoes through her parents hearts, just the same as our own children’s, just like your children’s echos in yours. And now they sit in fear as a new spot was found on her scans after several years of clear scans again. 


Every victory feels like it could be our girl too. But, in return, every set back can fuel and fan our own fears. I look at this happy, round, pink cheeked, sweet face of Charlotte’s and I think “how can she be anything but well.” And I KNOW...I KNOW that God has her in the palm of his hand and that he is guiding us along all the unknown roads we must walk and I KNOW that our Charlotte is NOT others and her story is her own. I know we are blessed and that she’s doing so great. I know these things. But you all I’m struggling and needing prayers. I wanted to post about September’s Childhood Cancer Awareness messages but I’m living the nightmare in front of you and anyone who loves us. You are coming right along with us and we know you are. You feel every high and every low right along with us, just like I do for these other families we’ve come to know and care about. These other families with a Charlotte too. And Nori deserves a break. To grow up. And her parents deserve to plan for their hopes and dreams instead of pouring through research and treatment protocols all while crying tears that can never leave their eyes because they need to stay strong and focused for Nori and their other children.


God please help them.


Help me. Village, please keep praying with us, specifically now for Nori as well as our own girl who will have full scans Sept 15-16. Sept 16 is our 14th wedding anniversary. Instead of celebrating with our focus on each other, we will be holding hands and praying for another victory for our baby girl. And that’s ok because as much as I sometimes wish we had an easier life, a safer one, I know she’s been called for something more then we can understand. And we are going with her. #charlottestrong

Comments

Post a Comment

Popular posts from this blog

ROUND 2 under way

By -
Image
It was exactly 4 Monday's ago. We left our pediatrician and ended up here at Duke Children's just about this time of day where we were about to receive Charlotte's cancer diagnosis. It was any parents worst nightmare as we came to learn and understand this diagnosis. It feels like 4 months ago. We are still coping and feeling our way, but never in a million years could I imagine being in this "place" that we are today, emotionally and spiritually. We are still coping and going through the grieving stages, but hearing the news today that Charlotte is healthy enough to begin round 2 was great news. A couple weeks ago, hearing that your child needed chemo was gut wrenching but today it is music to our ears. It means Charlotte has recovered from round 1 and is ready to continue to fight and heal while we all cheer her on. Her spunky spirit is back. She had a wonderful, restful weekend home playing with Taylor and Parker and also getting to see some family and a few f...
Read more

A fresh start for round 3

By -
Image
You know those weekends that you just don't want to end? The ones you want to freeze in time? It was a simple one and usually not even worth a mention. Because all we did was spend time together playing at home, saw some friends and family, enjoyed each other, just low key fun and quality time. It was just one of those weekends that we all usually take for granted and really WE SHOULD. I mean, as parents, yes, we all try to soak up the sweet moments and memory making times with our children. But we shouldn't have to relish every moment where our children are feeling happiness. We shouldn't have to soak up every day we can all be together. Or embrace each day our child feels healthy enough for normal play. No one should have to live their entire lives living in the sweet moments for fear it could all be pulled out from under them. But we are learning that this is our new reality. That the normalcy we use to take for granted is now precious time because as we travel down this...
Read more

Reliving June 13

By -
Image
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. ...
Read more