Charlotte's Journey

 This little light in the world is 8 today. As I glanced at her very first picture in our arms, and her very first birthday pictures, I was reminded of all the hopes we held in our hearts for our baby Charlotte. We could never know the road her life would take us back then of course, but those hopes still remain fierce and strong and POSSIBLE. Thank you God for gifting us this special soul to raise and to love. She continues to make every day of our lives more richer, more meaningful, and more joyful. I know you all celebrate every single milestone with us and thank you for loving our Charlotte. Happy birthday sweet girl! We love you so

If you ask a child “What would you like to be one day?” You might expect them to answer with anything other then “An adult.” But that’s the reality of 1 in every 285 children who will be diagnosed with cancer before their 20th birthday (ACCO.org stats) Will you help us, village? It seems rare and far removed, until it isn’t.  Have I ever shared that one of my best childhood friends, whom I grew up with throughout middle and high school AND roomed with for a year at Virginia Tech had a son who lost his battle with Stage IV Neuroblastoma few years before Charlotte was diagnosed with the same disease? In fact, one of the reasons I went into a physical state of shock when Charlotte’s official diagnosis returned was because I knew that word, Neuroblastoma. I knew what it was because I watched Trevor fight Neuroblastoma through his own carepage that his family would update. And I knew he fought so hard but gained his angel wings anyway. I literally hit the floor in shock and anguish when...

When we began this journey, Charlotte was but only 2. The 5 year survival rate for her high risk, stage IV diagnosis was 6 out of 10. Line up 10 Charlottes and 4 wouldn’t make it 5 years. In addition, the relapse rate was 5 out of 10 would have disease reoccur. Half. And Charlotte fell into that half in 2019. I have never, could never have asked our doctors of those kids who relapse, what are their chances. And that’s because Brian and I believe that number is changing drastically with new advancements in therapy, specifically the immunotherapy she has received. I did learn however, that in 2016, the year she was diagnosed, relapsed Neuroblastoma actually had a less then 5% chance of survival.  I know statistics like that could keep us up at night but they DO NOT reflect Charlotte specifically nor all the treatment she has received. I don’t for one minute believe there is a number that would reflect Charlotte. And I still hang on to what Dr Sun told me on day one, when I was litera...

Waiting is painful, but our oncology team spared us a tough weekend by sending me a message before they left for today—the official radiology report has not been released as they still need the attending to sign off on the initial reading but thankfully they could let me know that the preliminary results were good—no evidence of disease. Most of the day we walk around feeling sick while awaiting the news, and that is something that’s never going to change I’m afraid. It’s just all part of this. And no matter how much confidence and belief we have that she will remain clear, nothing can remove the sickening feeling we walk around with until we know for sure. The fact that they were able to extend us this kindness today is a true mercy. About to go sip a glass of wine with Brian by the fire pit and EXHALE. We wanted to let y’all know as we sure appreciate each and every one of you pulling so hard for our girl all this time. We believe the official report will return by Monday backing up ...

 First of all, I have had issues with this blog and I understand it will no longer notify those who have subscribed to follow Charlotte's care page when there is a new post. I am in the process of figuring this out and potentially change some things. Secondly, CHARLOTTE IS DOING AWESOME! She has routine scans tomorrow. She was seen in clinic today and besides one area of concern with extremely elevated ferritin levels (basically iron overload likely from all the blood transfusions due to treatment), her labs and check up look great. She will have an additional image taken of her foot because she has been complaining of pain for a couple weeks now on and off--likely just an injury from all her running and playing, but they like to leave no stone left unturned. We have an early morning tomorrow with both scans and audiology check ups, but I will update  with what we believe and pray will be CLEAR scan results as soon as I am able. We have so much to share and catch everyone up o...

Buying time. There are many parents being told that they are just buying time. Their child's cancer continuing to remain or grow despite treatment. They are left with difficult decisions to make regarding which treatment could benefit without doing tremendous harm. Quality of life decisions.  Trying to answer the question of what gives them a good chance for more time without causing damage that would shorten their time or impact the precious days that remain. As I write this, parents are hearing those words, sorting through those decisions and the grief that accompanies. There are two in particular. I have grown attached, my heart pulled towards both Elijah and Beckham. I have written occasionally about Beckham, but not as much because his family is a bit more private and shares only on occasion. Beckham is 11 and very close with his sister Navy who is just about 1 year younger then him. I spent some occasional time with them while at MSK over our time in treatment there, but it i...

 Charlotte’s scans remain CRYSTAL CLEAR❤️🌈Before we knew results but after our appointment, we blew off the rest of the school day and grabbed a mocktail 😆 and lunch and explored just a corner of the beautiful Sarah P. Duke Gardens next to the hospital. Charlotte loves bamboo trees and she found a forest of them along with a pond full of wonders. She collected some treasures and we carved our names and wandered amid the beauty. God is so near when we stop to try and feel him. Praise the lord. Our baby girl will keep going and keep moving towards the direction of our prayers. Thank all of you for your love and support and prayer! More to update very soon!!