Charlotte has relapsed

It has taken me 8 months to come to this website and post this news. Charlotte was clear of her cancer for 5 years...4 years off all therapy for her small focal relapse that was detected in 2019. She started having unexplained pain in her lower leg in the fall of 2024. Her final scan was scheduled for spring of 2025, but after growing concerns, we requested an MRI and moved up her MIBG scan. It was discovered late January 2025 that her cancer has returned, metastatic neuroblastoma had started growing in both of her leg bones and a spot on one arm. We were all beyond devastated. Her scans had been clear for 5 years and she was off all therapy for 4. She was thrown immediately back into treatment without much knowledge of how this had returned in this way, this far out from treatment. Relapsed Neuroblastoma this late is very rare. And we still don't have a lot of answers regarding what is driving her cancer and these stem cells except for 1 mutation that is not really targetable.

Charlotte, in her "Charlotteness", is THRIVING amid it all. 2 rounds of strong chemo caused her hair to fall out a 3rd time and lots of hospitalizations. She had a good response so our Duke Children's team consulting with our MSK team decided she might respond well to a protocol called HIITS--2 different chemo's plus an immunotherapy called Naxitamab. She was on the clincial trial for Naxitamab back in 2019-2020 at MSK! It was called 3F8 then but not it's commercialized and offered as a great immunotherapy option for a lot of kids. She is doing wonderfully and responding to this treatment well. She is in treatment for about 2 weeks and then off treatment 2 weeks. Her scans have been improving every time and she goes to school and normal life activities in her weeks off treatment. Keeping some normalcy for all 3 of our kids has always been a priority for Brian and I, and so we continue to try and do "all the things" when possible. And she continues to lead us all....into hope and new acceptance that now seems to govern our lives. We are still in defiance of this terrible cancer trying to steal everything from Charlotte and our family, but we have also tried to reach a new acceptance that involves embracing what is being asked of her and all of us in a new way. There is some peace in that...and it is absolutely God sent. Charlotte will continue indefinitely with treatments at this time, although many decisions will be made as we learn what is best for her.

We had needed to pause our family assistance while we focused on Charlotte. We paused many operations in 2025 and postponed some events. And yet our village kept rallying strongly around us through various ways. We are incredibly blessed at this community we have surrounding us. And all the love, care, support has helped keep us afloat personally, but also allowed Be The Rainbow Foundation to keep growing quietly while we regrouped. Our goal is to slowly begin some operations and we have in many ways. We may be small, but we are mighty. We may be solely volunteer run, but we have an army. We will keep trying to fill in the gaps and be a resource to families walking this long road. We are grateful to still have you all with us and for your prayers and love for our Charlotte. She will keep going, keep moving and leading us all along the way.