Charlotte's Journey

Our little fighter is simultaneously recovering from chemo AND what appears to be a little virus. Tuesday, she couldn’t keep down food or water and then she spiked a fever which landed us back at the hospital for a few hours, but Wednesday she was feeling much better and is on the mend 🌈 Just when I think she can’t surprise me any more, she does.  During the ER visit following the fever protocol, she asked to pull out some Kindergarten work 😳🤷🏻‍♀️😂 This girl is so determined. Determined to keep up with her class, determined to just be a 5 year old kid and juggle whatever is laid on her plate during this life she’s been given. I had a weak moment feeling exhausted and really wanting a break from the hospital yesterday and I began to feel sad that THIS is the life she knows. A life that revolves around hospitals and treatments and pokes and scans and medications and pain. I began to go down that thought process of how Brian and I want so much MORE for her, and all those...

1. What I can only describe as miraculous news from Lincoln’s family: his scan was clean. The lesions initially found are not active Neuroblastoma tumors. He can continue on the treatment plan he was on and continue his fight. His story, still being written, is a reminder that when we think we know the ending to a story, God often steps in with a surprise, often a better one then we could ever imagine even if it’s not an answer to a prayer. In Lincoln’s case, this development gives them so much hope and more options to help him combat this relentless disease. 2. Charlotte is currently working on a Kindergarten math assignment to keep up with her class, sitting on my lap, after just swallowing 3 chemo pills before receiving a second chemo infusion through her port in her chest. Her little feet are dangling and swaying, she is humming and thoughtfully tracing her numbers and coloring items that correlate to the correct numbers. This is her life. This is not the story Brian and I prayed...

I learned a new word today, seeing it written somewhere I was reading not once but twice . It spoke to my heart and I think God must have placed it there. Qarrtsiluni (pronounces kartsiloony) means “to sit together in darkness, often in anticipation.” It is an Inuit word, the language spoken by Eskimos in Alaska/Northern Canada/Greenland. The moment I saw this beautiful word and it’s meaning, it spoke to my heart. I was thinking about another Neuroblastoma mom all day today, Kaitlyn, mother of Lincoln, whom I have written about several times before. This family has been laid on my heart, perhaps like Charlotte has been laid on yours. And I was in qarrtsiluni today with her half a country away. Lincoln was recently sent home after scans revealing the black eye he developed was disease progression even after recent treatment. His parents were told to bring him home, call hospice, and make memories, to enjoy their time. He wanted a puppy with brown spots more then anything and so they got...

 Charlotte LOVES to cross off boxes on a calendar when counting down to something. The girl loves a calendar. It helps her understand time frames and see the goal or finish line. Yesterday, she got to cross off the last box on her radiation calendar. She did it! To celebrate, we met friends up at our neighborhood pool for pizza dinner and swimming! She did not want much hoopla but a little fun celebration was in order. Finishing radiation means TODAY was her FIRST FULL DAY OF SCHOOL! Her sweet class waited until she could be there for a frozen yogurt party that they earned too. Her teacher also shared that the principal arranged for Charlotte to have her own laptop in the classroom for when they use the computers during various center rotations. The keyboards are difficult to keep clean with many little hands on them and so they wanted to provide Charlotte this space. We can’t thank the school and staff and kids for all the love they surround Charlotte with every day. She is well...

Charlotte is slowly coming out of this little shell she has built around herself. Being back in treatment again has been jarring for us all. But Charlotte seemed to have lost a piece of herself and her understanding of herself, her identity. Losing her hair is a big part of that. Going back into chemo, the pokes, the medications, the radiation. It’s been a lot on our girl, on our family, but she’s doing it. And really, she’s doing kind of great. Going to Kindergarten for even just a 1/2 day has been HUGE for her self confidence and has helped remind her of her own voice. Charlotte had recently shied away from friends and from even speaking to many adults. The once out going, confident little girl has been acting timid, shy, and very uncertain of just about everything. It’s all understandable of course. But it is heartbreaking to watch her turn inward. She was starting to hide her face when someone would talk to her. She didn’t want to see some friends. She wouldn’t wear anything that...