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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 literally on the hospital floor trying to stand up after collapsing in despair and I looked up at her face and asked “can Charlotte survive?” And she looked me in the eyes and said “Yes. There are only 2 numbers that matter: 0 and 100 and we are going for 100%.” And 5 years later, relapse or not, we are still in it 100%. 

Charlotte is CLEAR with no evidence of cancer. We do still scan again in Dec and then again 3 months later in March to monitor her closely this year BUT we are discussing moving her monitoring out to every 6 months after that. That would be an amazing milestone for her.

Charlotte’s labs are also great with the exception of one number we have been watching. Her ferritin levels are very elevated which indicates she has iron overload in her blood. She has no symptoms of this at this moment and because the level remains stable at the moment, we will just continue to watch and monitor this. This can occur in those who have received so many blood transfusions. Charlotte has received countless red blood cell and platelet transfusions which can elevate the iron in her blood stream over time. There could be other reasons for this elevated ferritin as well but this is what we believe has occurred with her at the moment. We will watch and wait for now. 

So, Charlotte will get her 8th birthday in a couple weeks, and Halloween, and thanksgiving all before we scan again. I’m watching her at her swim team practice while I write this update. Watching her proudly swim along with her peers. She competed in her first swim meet on her year round team, YOTA. The backstroke is currently her best and most favorite stroke. She craves pickles. She hates other peoples arm pits. She has a laugh that will ripple through your heart all day long. She walks around this world with a song in her heart, often passing through her lips as she hums and sings. She loves playing with friends but is actually a little shy at first and has started talking in a soft quiet voice when uncertain. These are just a few of the little quirks I wanted to share about the sweet soul you have surrounded in love and prayers all this time. She will be 8 on 10/18 and we are still going for 100%.

Thank you God and thank you village❤️🌈