Charlotte's Journey

 It’s both uneasy yet nice to not have a lot to update on with regards to Charlotte. What spurs me to write this update involves someone who has been laid on my heart:  These days if Charlotte isn’t singing a song, she’s skipping around humming or sitting somewhere sketching or outside riding her bike or playing in the yard with friends or her siblings, or maybe she’s creating some unique craft from her imagination. Her world right now is as we prayed it would be. In this moment, she is a happy and vibrant and healthy first grader. Elijah’s world was once how his parents prayed it would be. But this beast can come back in the night and rob them of a childhood. He is fighting so hard but he is going through a tough time fighting his recent relapse with Neuroblastoma. The new tumor is pressing on a nerve behind his eyes affecting his vision. He is having a hard time seeing even inches from his face and suffering some other side effects from both current treatment and this diseas...

 This will be short and sweet but I’ll write more soon I promise! I’m sorry I have taken a break but your girl Charlotte hasn’t! She’s been living life like a 7 year old should! That’s right her birthday was Oct 18 and she’s SEVEN! We have been busy juggling virtual remote learning along with, well, life!  She just returned from around 6 of 7 of the vaccine trial at MSK as well! You guys....she looks so good. She feels so good. She is growing, and learning, and just HAPPY.  Praise God! We know not to take a second of it for granted. Let me come back to write much more soon.  Thank you for keeping her close in prayer you all...they are working and we still need them❤️🌈#Charlottestrong

For the final day of September’s Childhood Cancer Awareness, I wanted to share one of many tough memories. Today, last year, was another hard and scary day. It was Charlotte’s first day of a new specialized immunotherapy called 3F8 she received for her battle against relapsed Neuroblastoma. Today, I want to tell her it’s all over. Today, I want to tell her she’s d one fighting and her cancer is gone forever. Today, I want to tell her she will never go through painful treatments again. Because of so many of you out there, those statements are becoming a reality! Amazing new therapies have given her a real chance. But I can’t tell her any of those things today. We have always told her a simple truth. Her simple truth is that we believe she will overcome and beat this damn disease but her r eality is she needs help. She needs cutting edge maintenance therapies to help her body, specifically her immune system, to fight any lingering, residual cancer cells that could be hiding, stems cells ...

https://youtu.be/_aBupb3Q7Es Charlotte has happy news to share❤️🌈Thank You God!! She gets school. She gets to go camping. She gets her birthday in October. She gets Halloween and Thanksgiving. She gets to play with her siblings and friends and be home. She gets to keep going, keep moving forward.  Thank you thank you. She knows you are praying for and loving her. She knows you are celebrating with us. We try to help all of our children understand the love that is surrounding us while we witness God’s grace. Thank you for being part of her story. 

So proud of our sweet girl as she decided herself to have both her CT and MRI today without sedation. She did beautifully! The MRI images her head/brain and she must lay still with her head enclosed in a vice so she doesn’t move it. The machine is very loud and the “tunnel” has scared her in the past. But today she made the choice herself to stay awake and happily laid there for the 40 minute scan (and was able to watch some of a movie during it too🥰). The CT (picture above) is quicker and over in minutes as it images her chest, abdomen, and pelvis. Tomorrow is the long MIBG scan which she just hasn’t wanted to try awake yet. For all these scans, Charlotte’s little body is flushed with toxic chemicals and radiation every few months for the necessary imaging, hurting our hearts every time. Today, she received contrast for the CT, contrast for the MRI, AND a radioactive tracer injection for tomorrow’s MIBG, thankfully no sedation narcotics. Scan toxicity is a real concern for these kids...

Our sweet girl helping BOP❤️🌈Thank you so much to those who have already donated to this special group who has helped fund research that has directly impacted our Charlotte! And thank you for all for your support and prayers this week and always. Charlotte has scans Tuesday and Wednesday this week. We feel surrounded by hope and faith in that she will keep going, keep moving onward towards complete healing. Thank you for sharing the video to help fund important research that can and is saving our baby girl and many other children. (link here too https://vimeo.com/457764895) Band of Parents  video link

This year, in first grade, Charlotte was asked to write about a time where she was hurt. When I heard this, I quietly walked over to see what she was going to write about. I wondered which of the countless moments she would choose. There were so many and with every single one, me and Brian’s heart would quietly break. Those breaks can never be fixed of course but we patched them up when we could and moved on. But not Charlotte😊She picked up her chunky pencil and wrote about dropping a heavy object on her toe which made her toe nail purple. She then drew a picture of the falling object landing on her purple toe. I don’t know what she remembers or what scars are left that we can’t see. But I know when she was asked to write about something that hurt, she contemplated the time she fell of her bike or the time she jumped off the bed and hurt her ankle, ultimately choosing the purple toe story instead of countless others I can recall during her fight. I know I have shared my fair share of ...