Charlotte's Journey

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

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 on. I