Charlotte's Journey

 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...

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...

 We know you all will celebrate this with us— This is THE FIRST DECEMBER since 2016 we haven’t had to brace ourselves and go in to the hospital for Charlotte’s disease evaluations/scans. INSTEAD, Be The Rainbow Foundation will bring holiday cheer-gifts for kids, some treats for the nursing staff, and hopefully a little hope for parents who just need to BELIEVE. Needless to say I’ve had tears in my eyes all week trying to coordainte our visit to Duke in this new capacity this Christmas/holiday season. God is so good. And every single gift and every single dollar has helped us make a real difference to so many families. Thank you all for your continued prayers and support and love Playing with her advent calendar of slime. Charlotte is constantly creating concoctions and polymers and loves chemistry I think! Charlotte and Brian in our town of Apex Christmas Parade this year with her YGuides crew! 2016 Christmas while not only hospitalized but Charlotte had never been more sick. Brian...

  Here is 9. Here is hope, and joy, and grit, and determination, and silly, and grace. Charlotte is full of happy. She is full of imagination,  compassion, creativity, and JOY. You all know how desperately we have needed to visualize her just like this today, and our prayers came true. I get bogged down like we all do with adulting and parenting but I think if Charlotte could truly ask for one gift from anyone, it would be to pause what you think is so important and just go play with the ones you love. Be in the moment with them and soak them in. Everything else can wait. Charlotte’s ask this evening is for us to take her to the pet store so she can pick out a hamster so here we go😂Happy 9th to our baby girl! We know you are all celebrating right along with her/us!

  First of all Charlotte remains CLEAR with no evidence of disease! Second of all it was the “Best scan day ever!” according to Charlotte and there have been so many scan days…but yesterday she got to bring GIFTS she helped to pick out to Duke Children's Hospital from Be The Rainbow Foundation! Thanks to all of you and your generosity, we could help some special kids, their siblings, and parents while they face childhood cancer💕🌈 Thank you all for all of your love and prayers…she gets 6 months until her next evaluation! With each scan, a mountain and a milestone. She will keep going, keep moving forward and shining that light of hers

https://youtube.com/shorts/vb8-dATqrJ0?feature=share I had just finished telling Charlotte I felt a rainbow coming on after her appointments at Duke Children’s today and then one appeared. Charlotte said “Hi God!” I believe she will always feel He is with her and isn’t that a true gift.  The video and photo is from 5 years ago YESTERDAY when we had a party at Duke Children’s to celebrate the END of 18 months of cancer treatment for our Charlotte! While waiting for scans, a musician set up their violin and started playing “Somewhere over the rainbow” right in front of us. So many God winks along our journey to heal Charlotte. We believed it was over but the cancer started to come back almost 2 years after this video. More was to be asked of Charlotte and our family. 5 years is the “magic number” in the stage IV, high risk Neuroblastoma world. That is when they stop monitoring for recurrence. Charlotte is working her way to this 5 year milestone and thank you for praying with us that...

 Well village, the week is finally here. The first time we have gone 6 months since scans and Charlotte will have her Duke check up appointments and scans Thursday and Friday this week. Most of you know Brian and I tread water during these weeks with an indescribable feeling in the pit of our stomachs. It’s not because we don’t believe or our faith waivers, but it’s because of what we’ve seen and done and what we’ve watched Charlotte endure and the fear that maybe just maybe it really isn’t all over. Hope is the only thing stronger then fear.  The last time we pushed scans back even a little was to 4 months in 2019 and the doctors found a new tumor just starting to grow into her femur. It was Neuroblastoma that returned or never died and no one knows where it came from nor where else it might also be hiding. Charlotte beat it back again but standard care is scans for 5 years and this cycle will be 2.5 years off all treatment and 3 years since her scans showed all clear. We are...