Charlotte's Journey

I’m going to steal Charlotte’s catch phrase she has used so many times over this year : “BEST DAY EVER”. For our family, today was the best Christmas ever for sure. This entire season has been the best holiday season ever. The worrier in me peeks her head in at times and then I want to freeze time for fear it’s too good to last. But, the person I have grown into over the past 21 months knows that every time I think I have things figured out, I realize I truly know very little. Just when I think life can’t get any better, God happens, and it gets better. Does this “better life” include hard times that are full of unimaginable pain and fear? Yes. Does this involve watching the people I love most struggle and hurt? Yes. Does this involve spending time away from each other, creating a strain on our family relationships? Yes.  Does this cause burdens on our hearts and in our lives every way imaginable from financial to mental to emotional? Yes. Does this involve facing our worst fears a...

After a long day, we are home with good news but also new information we will pray on. First of all, Charlotte’s scan results are overall GOOD with no evidence of Neuroblastoma! We feel so blessed and will celebrate that! Her CT did have a new finding of an area to watch on her lower sacrum (spine/tailbone) in which at this time can neither be called a tumor nor ruled out. This spot in her bone could be damage from radiation, sclerosis, etc and may not be disease at all. Our doctors at Duke are not concerned at this time and this area will be looked at further in March when she has her next scheduled scans. We will pray that once Sloan Kettering reviews all of these scans, they feel the same way and do not feel the need to investigate this spot via biopsy. In addition, Charlotte has moderate to severe high frequency hearing loss which is not a surprise to us as we understand this to be a common side effect from all the chemotherapy. We have decided to reassess with Duke Audiology at he...

We are sitting at Duke as I write this, preparing for 3 days of appointments and scans. But first, this morning, Charlotte got to sing in her Preschool Christmas Chapel Program! When Brian and I saw our Pastor Tim there, we all had a teary moment because we all remembered when he sat with us at the hospital this day last year while Charlotte was in transplant and she watched a video on his phone over and over of the children singing this very program. He told her, “next year, this will be you.” And it is! She is here! Thank you God! And thank you all out there helping to pray and raise us up as we await scan results so our girl can keep going, keep moving🌈 We hope to have news by Thursday and Friday this week.  (Also I can’t seem to get my pictures/videos to load at the moment so I will update this again when I have the energy to figure out why 😩) #Charlottestrong Finally, today is Charlotte’s sisters birthday. Our Taylor is 9. And although we had appointment at duke, she cele...