Charlotte's Journey

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

 Every victory from one of the children we know who are fighting Neuroblastoma feels like a victory to us all. And every set back, feels like a gut punch to us all. There is a family with a little girl named Nori, who is so much like our Charlotte. First time we met her, back in 2017, she was always wearing her Snow White night gown and dancing. She too just started first grade after fighting relapsed Neuroblastoma. She too runs around happily while playing with her sister. She too grew back her hair a second time and healed from more treatment. Her laughter echoes through her parents hearts, just the same as our own children’s, just like your children’s echos in yours. And now they sit in fear as a new spot was found on her scans after several years of clear scans again.  Every victory feels like it could be our girl too. But, in return, every set back can fuel and fan our own fears. I look at this happy, round, pink cheeked, sweet face of Charlotte’s and I think “how can she be anyth

 Just weeks before Charlotte’s diagnosis, I snapped these pictures of our silly 2 year old girl including one where she was proudly wearing her potty training underpants. I have come back to stare at these from time to time, trying to see any signs of cancer or the mass in her abdomen that would soon be discovered. She started to have unexplained abdominal pain and constipation, as well as lethargy and paleness. The blood work showed anemia and our pediatrician used terms like TEC and viral causes that could be causing a temporary condition of bone marrow suppression and kept pushing Miralax to help with the constipation. Meanwhile, our girl suffered as the cancer began to grow and spread uncontrollably, silently. I carried her everywhere, she became too weak to play for long and slept more then normal. We went to our doctor every week for over a month for follow ups. Her belly started to distend.  At one point during all the repeat follow up visits, our pediatrician drew further blood

 September is Childhood Cancer Awareness Month. Go GOLD if you can on your social media page, or by spreading awareness in any way you can to help support the missions of many amazing organizations who help create the funds needed to fight pediatric cancer and help support these families in their time of need. Help honor our Charlotte, those who came before her, those knee deep in their fight, and those who have yet to start their journey...for your own child, grandchild, friend of your child, niece or nephew. No one is safe from pediatric cancer and we can’t fight alone. Thank you for helping us village. We have been surrounded by so much help, so many blessings and opportunities while on this road to heal our baby girl. We are pulled and call to give back in small ways As well as hopefully big ways in the future. #charlottestrong