Charlotte's Journey

There are 2 children back in their fight against Neuroblastoma that lay heavy on my heart today and if those of you in our own village could please take a moment to lift them up in prayer as they both await scan/biopsy results today?  Azalea is the little girl Charlotte made a couple videos for to help her take her oral medication that accompanied this vaccine trial. Charlotte helped cheer her on as Azalea was afraid of this medication. She was about to get her final injection when the team discovered she has relapsed after almost 2 years clear. Lincoln is a little boy the same age as Charlotte who we also met up at MSK in NYC. He was going through the antibody treatment up there when the team discovered he relapsed and is back in treatment getting more chemo, but new symptoms have suddenly appeared and the team has ordered an MRI of the head for fear his disease has progressed.  At the moment, Charlotte is carrying on in life as she damn well deserves while Brian and I ar...

Last week, on October 18, Charlotte turned 5! Charlotte was a surprise. She was God’s better plan, better then we could ever have imagined. God still continues to show us he has a plan bigger and better then we ever could imagine. She’s a gift to us and to so many. Looking back over the last 5 years brings a proud happy tear to me and Brian’s eyes. She’s fought for this year, this day.  For her birthday, Charlotte wanted to go to a pumpkin patch to pick out pumpkins and play with her brother and sister, and have Chic-Fil-A for dinner and so we did 😆! Brian and I converted her toddler bed that was once even Taylor’s crib into a full size big girl bed, and we transformed her room into a big girl room with rainbow decor of course! Then, she had a birthday party over the weekend with some of her little friends and her cousin Evan who came to visit with Uncle Tim, along with some of her grandparents! She wanted to have a dress up party so kids came dressed as super heros and pr...

Brian and I would like to send a shout out thanking all of you for your support and generosity as Brian raised funds for Duke Children’s Hospital! His fundraising campaign raised almost $8,000! Incredible! He was one of the top fundraisers! We are so grateful and honored by your support. We are so proud to help give back to this amazing place that has taken such good care of our baby girl. I will post some pictures and a video below of Brian rappelling down the 17 story historic Museum Hotel in downtown Durham. It was such a fun event and he had a blast! We think he should be Spider-Man for Halloween 🎃 🕷 Familystrong Rachel, one of our special nurses from Duke came out to watch https://youtu.be/Y407HZYtqBE

Hiding the rock to spread hope Incredible rainbow in our backyard the evening we got scan results in! Our friend and neighbor Amy G took this one and sent us a message to let us know there was a rainbow in our neighborhood. We would have missed it were it not for her! First off...we got a backyard rainbow tonight as we sit here celebrating this news! Incredible! (Pictures later). Thanking God. Charlotte’s scans are CLEAR🌈🌈🌈Her labs look great. There is no evidence of disease one year post treatment. This is a HUGE milestone for a child with stage IV Neuroblastoma. Recently, I’ve gotten asked how long Charlotte will be monitored for. Although it’s hard to believe that this cancer could rear its head again, children like Charlotte can respond to therapy and be cleared of disease only for it to reoccur. She is at risk for another 4 years. After 5 years clear, relapse is almost unheard of and that’s when we could start using the word cured. With that said, e...

The anxiety we feel every time it’s time for scans is honestly hard to out into words. This time it’s been a little harder, maybe because we are delayed and so we geared up only to have to wait an additional 2 weeks. Maybe because it marks a big milestone off 1 year post treatment. Maybe it’s becUse we are finishing up the clinical trial and so now we need the information to begin to make the next tough decisions. Maybe it’s because of some difficult stories I’ve followed recently with kids relapsing after all this treatment, after they’ve gone back to their lives, often with zero symptoms. But today we got a hallelujah to share: The New York team called today with good news as we go into scans tomorrow. Charlotte’s bone marrow biopsy results came back normal!  It isn’t just evidence of Neuroblastoma they look for but also other signs of disease and cancer that can develop due to the harsh treatment. We know it isn’t just cancer our girl is up against. So, we get to let one breath ...

Brian is going Over the Edge:) As you know, one of our many blessings has been to have Duke Children's in our backyard as our Charlotte has been in their caring hands.  We are forever grateful so when we learned of this fundraiser for Duke Children's, we jumped at the chance to help give back...not to mention Brian has always wanted to rappel down a building!  Check out his page below and if you are able to give, know it is going to an amazing place, doing amazing work for not only Charlotte but for children all over the world, including research that can reach children globally.  And thank you to those who have already supported Brian in this fundraiser.  We are so grateful for all your generosity.  We will share his adventure with you come Oct 13! This week our doctors up at MSK in NYC actually asked us to come there for her appointments before we reschedule her scans at home hospital of Duke Children's so, she and I are hopping a flight to NY this We...