Charlotte's Journey

I would of walked on by without a second glance, but Charlotte stopped me and wanted to read this almost hidden poster below at Duke Children’s Hospital today when we went in to have her damaged hearing aids replaced. She has cried a river over getting hearing aids again after an entire summer of not having them. She is afraid she will be different from her classmates and that people will make fun of her. She told me yesterday “Why did I have to have cancer! I hate it! It’s going to ruin my life.” And for a while she resisted me holding and consoling her…a piece of my heart breaking with every hurt sob. On a scale of mild to moderate to severe to profound, Charlotte’s hearing loss is severe. Brian and I have walked her through the power of these aids helping her especially in school but of course she is 8 and doesn’t want to stand out. Brian and I know hearing loss is a small price to pay for what she needed to go through to even be here, but our momma and daddy hearts break watching h...

Brian and I have sat beside Charlotte’s hospital bed more times then we could ever count. Many of the times we were either afraid, exhausted, devastated, anxious, alone. So when it was 100 degrees in the North Carolina heat yesterday, and we got to sit here at a local event helping to share our new nonprofit Be The Rainbow Foundation’s mission and promote our FIRST fundraiser, and just be with neighbors and friends and our towns folk…well I think of all the times we prayed God had a bigger plan in the making then we could of ever imagined. And this is all part of it. Hoping to help shoulder some burdens, keep families together, and bring them HOPE through Charlotte is what we are all about. And we see and feel you all right here helping us do just that. We are so excited to announce the HAIR DARR CHALLENGE FUNDRAISER to benefit Be The Rainbow Foundation’s work! Please click on the link for all the info and please help us by joining in and/or sharing! Thanks everyone! https://betherainb...

“People will forget what what you said and forget what you did, but they will never forget how you made them feel”. Yesterday, Charlotte was having ear pain along with head cold symptoms so off to the pediatrician we went. There was a nurse there helping out for the day from Duke Children’s Hospital and she REMEMBERED Charlotte from her time with the pediatric surgical team. Charlotte has had 7 surgeries during her time in treatment over the years at Duke and this nurse was helping out in the OR during one of Charlotte’s surgeries. I thought about this on our drive home and how could this nurse who sees thousands of kids remember our Charlotte and her name? And the Maya Angelo quote above rang out to me. Later on when we got home, 2 of Charlotte’s best friends rang the doorbell with get well cards they made her. Charlotte will never remember what they say or even that they did this…but she will remember the way the people she has in her life makes her feel. I believe we all do. The imp...

 Quick update but more soon—3rd GRADE here she comes! Fresh off the beach with sun kissed freckles and sweetest giggle you’ve ever heard. Wearing a bracelet that says Keep Going sent from some special person in our village. And keep going she will! Have a great first day Charlotte! We love you soooo much. And as always we feel you prayers for our sweet girl! Keep them coming please🌈❤️Thank You God

  We are off and running!! We have been able to help families by assisting with lodging, flights, travel expenses such as gas, meals, and specialty items such as collapsible wagons which help families in a variety of ways when they come for hospital appointments. We are sponsoring Panera breakfast once a month for families in patient at Duke Children’s hospital. And this past week, my heart was heavy when we helped a family bury their 4 year old little boy named Isaac who was fighting ALL, We were able to help alleviate some of the financial burdens this sweet family was facing. Do you know how much it costs to bury a child? $4,000. We have all seen the prices at the gas pumps, grocery stores, and perhaps airline tickets. These realities are especially hard for these families facing childhood cancer. And so here we are, trying to fill in any cracks and gaps as we are able. In any way we are able. And we are able because of YOU! Because of your generous gifts and donations helping u...

 We are excited to say we have begun working and helping families! We are able to start helping to ease the burden for some pediatric oncology families we have been connected with through social services and family support organizations. A few things we have been able to help with include travel expenses for families traveling for treatment, meal assistance, and some specilaty care items such as this collapsible wagon. I wanted to share this story with you all below, along with an updated picture of our family this Easter❤️🌈Thank you village! Thank you for coming along with us even further on this journey Sharing a full circle moment with you all. Some may remember Charlotte’s red wagon days. She was so sick. Just started chemotherapy. She shut down and wouldn’t walk and would hardly eat or speak. But a ride in the wagon seemed to not only bring her back, but help me feel like a stroll down those hospital halls might one day lead us to a stroll home with a happy and healthy Charlo...

6 years ago today  Posing during clinic today Charlotte sharing her news Just when we thought the news couldn’t get any better, village.  1. Charlotte’s scans are clear! 2 years off treatment for relapse and she’s still clear. This is a huge milestone! 2. Both Duke and MSK have approved Charlotte to move out to 6 month scanning intervals for the next couple years. This is a huge milestone for her specific Neuroblastoma diagnosis (remembering she was placed in the highest risk stratus and stage IV with a specific gene detected in her tumor that they shared is associated with the poorest outcomes, and with a relapse giving her an even worse prognosis but of course we never liked talking much about that). Take that cancer! As I shared, this is the week Charlotte was diagnosed 6 years ago. This picture below we took 6 years ago this morning as we got ready to send her in for her tumor and bone marrow biopsy and central line surgery placement. She would start chemotherapy tomorrow ...