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 b...

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...

Our week at the beach last week started less then perfect, stormy with chilly air and rain but rainbows, sun, and warmth soon followed. For Brian and I, it honestly could have been a tropical paradise for all we knew because this year we truly were able to relax and unwind and soak up the glorious news of Charlotte’s scans showing no evidence of disease (NED)! Our perspective forever altered for the better amid a very hard year. Then today, a memory popped up from my phone with pictures reminding us of today just one year ago...today was Charlotte’s first day back in treatment. My heart stopped when this memory came up today. We’ve been on cloud 9 I forgot today was the day. I’m not sure how I even found the words to write below the pictures I had snapped at the hospital as Brian and I were so devastated and afraid. We didn’t know what this year would look like...would her cancer progress with vengeance like relapsed Neuroblastoma can do, would she respond to treatment and fight it b...

Charlotte’s scans are CLEAR! No evidence of disease🌈❤️We waited all day for the call and  the agony of waiting is impossible to describe but I write this update with my heart still beating out of my chest! We are so grateful for this moment and this day and for all of the love and prayers. Our sweet girl gets a summer. Our sweet family gets a vacation at the beach next week to really just BE...be together, be at peace, be with family, be truly JOYFUL. Oh thank you God #familystrong

Scan week is here. Because of COVID restrictions in place, only one parent can accompany Charlotte for her appointments. Usually we have a clinic appointment the day after her scans to go over the results with her doctor, but the anxiety of me doing that alone has built up and thankfully our Oncologist let us flip her schedule and do her check up first and instead receive a phone call later today or sometime tomorrow with scan results. Yesterday, after her radioactive tracer injection, we spent time with child life at the MIBG scanner learning more about it with the hopes Charlotte could work towards having this long 2 hour scan done without sedation and lay there to watch a movie instead. It’s a long scan and she is strapped down and unable to move or else they will have to repeat it so for young children this is very daunting. Today, she chose to be sedated again and so we will keep working towards this one baby step at a time. I can’t tell you in any known words what emotions we...

We made it❤️🌈It’s safe to say this school year did not go as we had hoped. Just a few weeks before the first day of school, Charlotte was diagnosed with relapsed Neuroblastoma and our world came crashing down. She was thrown back into treatment...more chemo, more radiation, a new immunotherapy we had to travel over 5 months to NYC for. We juggled school and activities and home life best we could among the appointments and scans and travels and side effects and fear and worry. Then COVID further complicated the world and everyone’s lives including ours. Yet....we saw our children somehow BLOSSOM amid it all. Taylor shined and has graduated on to middle school. Charlotte mastered all grade level expectations and received a “Class Hero” award yesterday at her virtual end of year K celebration as she taught everyone what hope and determination could do. And Parker...who is still his happy go lucky, sweet, charming, bright and happy self excelled and finished 3rd grade strong! Of course, w...