Exactly 7 years in the making

By -





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 some of our little friends never make it back home. We watched helplessly for what felt like a long time. But we said that one day, with God’s grace and mercy and help, we would get through this as a family of 5 and that we WOULD find a way to help other families. 


The pediatric cancer that came out of nowhere, led us somewhere. It led us right here. And after all the storms and rainbows, one emotion that overwhelms them all is a gratitude beyond measure to God for carrying us and helping us walk when we couldn’t see or understand a thing. He gave us a strength and a peace we could carry inside that surpassed all of our own understandings. He gave us a village of family and friends that supported us and helped build a community of faith. We are forever changed. Life forever altered. But our gratitude deepens our joy and we get the opportunity to help others going through this. We get to help be a rainbow for them through Be The Rainbow Foundation’s mission. We get to share Charlotte’s journey in whatever way we are led with the hopes that her suffering and her story positively impacts someone else’s life somehow. We get to share hope and our gifts. At the end of the day, we are still here, all 5 of us, together.


This is what we fought so hard for and what we will keep fighting for.


Charlotte has scans and some other long term care appointments at Duke Children’s next Thursday and Friday. We sure appreciate all of your prayers. We thank God for where we are today and know it’s not always our timing but after 7 years in the making, right here and right now is part of the moments we’ve prayed for. And that’s pretty darn special




 

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