Charlotte's Journey

 13 years ago, a group of parents, just like Brian and I, felt helpless and desperate. They asked the Neuroblastoma doctors at MSK what they could do to help their children. That’s when these parents banded together and formed The Band of Parents. They have helped fund what we are praying can help cure our Charlotte: 3F8 immunotherapy and the neuroblastoma vaccine for maintenance. CoVid19 has hurt fundraising efforts. So, Charlotte was asked to help. We sent this video for them to use in conjunction with other children who have benefited from the research they helped fund now for over a decade. They have also helped house us and many others while in NYC (Manhattan) for treatment. Unfortunately, the cure for cancer is....money. Advancements would not be possible without groups like this because federal funding is very limited for pediatric cancer research. Only 4% a year is allocated, which leaves researchers looking for help. I try to imagine sitting in the hospital like they did back

Today, we won the coin toss. Charlotte’s bone marrow biopsy has returned CLEAR! And I realized that this year, she gets to start school, precious first grade, with no evidence of disease. She has full scans Sept 8-9(MRI, CT, MIBG) for her routine surveillance, and her next injection for the vaccine study is end of October, but for now....for now she gets to be 6 and enjoy life. She gets to have the end of her summer full of endless playing and lots of swimming and get to just be. We get to breathe and relish in what feels like God's grace for a few more weeks until we hold our breaths for scans again. I realized recently how to put something I feel into words. You know when you toss a coin? It flips in the air until it lands and you never know which side will land up. Its 50/50 heads or tails. Brian and I live in that space where the coin is flipping in mid air. As it approaches landing, our insides clench and our hearts feel like they are beating outside of our chest, and we simul

“Keep going. That’s all you have to do, ever. You really don’t have to be amazing or fierce or beautiful or successful or good. Just keep going. Slowly is fine. Crawling is fine. No feeling is ever final. Except hope.” -Glennon Doyle Her remarks spoke to me on so many levels. Maybe they speak to you and so I’m sharing them. And the good news from us is that Charlotte keeps going, keeps moving onward, forward. And I’ve stopped worrying about the pace because slowly, as it turns out, is just fine by us. We just arrived in NYC today for her round 5 of 7 for the Neuroblastoma Vaccine for maintenance trial. We flew this time and that went very well. We are still staying at a nearby hotel arranged by the Band of Parents as RMH is still not accepting new families. Both of us went in today for COVID testing (or as Charlotte calls it “tickling our brain”🤣). Tomorrow she will receive her 5th vaccine injection and then Wednesday she’ll have a 4 location bone marrow biopsy for routine surveillanc