Charlotte's Journey

Pushing me on the swing brings Charlotte so much joy that even though I’m motion sick for hours afterwards, I can’t say no. She needed the smile today. I wish I could say she doesn’t remember any of the pain and fears from the last 1.5 years but she reminds us from time to time, as she has done today, that there are things that haunt her. All day today, she has carried the feelings left behind by a scary dream that she had last night. There was a “big scanner that looked into my bones” and something about me telling her not to worry because there was enough oxygen. And something about falling down into a drain and Taylor screamed and that if she fell down into the dark hole she would die. She cried saying she doesn’t want to die. From 3am-4am and again many times today, her dream felt so real. She wanted to tell us all about it but you could see her choke back her tears. She must have told us the dream 5 times already today and when she laid her little head on her pillow for an aftern

Together home for Thanksgiving! We are so grateful for this place and time in our lives! We are so grateful for all of you, our amazingly uplifting, faith-filled, strong village of friends, neighbors, and family. We did somehow celebrate last year, forcing brave smiles for the children while Charlotte was in Bone Marrow Transplant. Brian and I vaguely remember gathering for a couple hours at the hospital, the 4 of us eating a meal provided by the hospital that Charlotte was too sick to be a part of. We didnt know the road that laid ahead but we were so grateful she had finished her last chemotherapy of her protocol. We still had her and each other. We tried to convince our hearts it didn’t matter where we were as long as we could be together even if just for a little while. Those thoughts pulled us through. And all of it, every single second of it, makes this year have even deeper roots where our gratitude lies. So this year, we celebrated all together with some friends, who are like f

Jax passed away this morning. “Apple Jax” turned 3 year’s old just 2 days before Charlotte’s birthday on October 16. 10 Days later, they learned his cancer had returned, a large mass growing in his abdomen. Within a few days they learned it was so aggressive, it had gone into his liver, rendering it beyond repair. They sought out treatment options only to learn there was none. They brought Jax home on hospice care. His dad wrote me a few days ago that Jax stopped eating as the tumor was pressing into his stomach and that he was slowly refusing even to drink. He said they “are holding on to hope but preparing for the worst.” He died today, 24 days after learning his cancer had returned. Just like us, 24 days ago after just celebrating another birthday and thanking God for that, they had begun planning for Halloween and Thanksgiving and probably Christmas. They were working as he played with his friends and teachers in daycare. 24 Days. They found his cancer came back with vengeance

Charlotte and I went up to MSK in NYC Wednesday 11/15 for her to receive the 4th of 7 Vaccine injections. As we got ready to board, she spotted 2 rainbows next to each other on the floor of the airport. After we boarded, the sunlight reflecting off the sequins on her butterfly sweater she got from Pops and Mimi for her birthday, scattered the light all around us in such a way that it created a disco ball effect, bouncing off the seats and walls and ceilings 😂 . It was so much fun! We will take every smile, every laugh, every God Wink we can get! She is doing fantastic with this Clinical Trial. She is tolerating everything required very well, even the oral medication she is required to take 2 weeks on-2 weeks off. It is a thick, viscous solution called Beta Glucan derived from Yeast and she has to take it on an empty belly with no food or water for an hour before or after. And it’s no small amount she needs to swallow at a whopping 30 ml every day for 2 weeks. This will go on fo

While Charlotte was going though transplant at Duke Children’s, we met 2 other families going through Neuroblastoma treatment. Jacob and Jax were ahead of us in treatment. I’ve written about Jacob before and you may remember. His mother initially spoke to us about Proton Radiation and The Vaccine trial at sloan Kettering. They were the first family we met going through this and we became quite friendly. We had asked for your prayers for Jacob before. Once he finished treatment  his scans to begin the vaccine trial revealed additional metastasis in a new location as well as some stubborn areas that had returned. He reentered treatment, this time through Sloan’s protocol, where he received more chemo and radiation and their own antibody therapy. He is responding to this treatment and his scans are improving. Prayers are working along with this new medicine, targeting the stubborn cancer. Jax is the second family we met while in patient in Duke’s Bone Marrow Transplant Unit. Jax was beg

When I was in college, Christmas of 1997, my mom gave me a tiny Christmas tree, only about 12 inches tall, to decorate my room and for good luck on my final exams. I put this little tree up somewhere, decorated in the same dollar store ornaments, every year. I took this little tree with me after graduation and proudly displayed it on my first coffee table in my little one bedroom apartment I had in Richmond, VA. It came with me back to Northern VA where I moved back home after feeling defeated from what felt like a failed attempt at what I always thought I wanted to do for my career. It moved with me into one of my best friends home she bought where I rented a room as I began a new career. It moved with me down to North Carolina as I married Brian and became Mrs. Reynolds. We proudly found a place for it somewhere in our first little home we had together as we celebrated our first Christmas. It moved with us to our new home where we then welcomed Taylor and then Parker. I packed it up

Charlotte was so excited for Halloween this year. At her age, every holiday feels like the first time. Although she was home recovering from her first of two stem cell transplants over Halloween last year, she was not 100% and we still had some restrictions. She tired easily and we didn’t want her around a big crowd therefore she spent most of it in the stroller as we walked the neighborhood with her big sister and brother. But not this year! This year she did it all! She began the evening at our annual driveway pretrick or treating mingler. I saw her pulling out paper plates and carefully walking down the row of food, thoughtfully placing items among a handful of paper plates she laid out. I then watched her take turns grabbing a plate and walking around handing it to someone. She was playing hostess 😂 I think it’s safe to say the girl loves a party! After some light finger foods for dinner, she happily followed her big sister and brother and some of their friends around going do