Scan week kicks off with good news, and lessons from Charlotte🌈

The anxiety we feel every time it’s time for scans is honestly hard to out into words. This time it’s been a little harder, maybe because we are delayed and so we geared up only to have to wait an additional 2 weeks. Maybe because it marks a big milestone off 1 year post treatment. Maybe it’s becUse we are finishing up the clinical trial and so now we need the information to begin to make the next tough decisions. Maybe it’s because of some difficult stories I’ve followed recently with kids relapsing after all this treatment, after they’ve gone back to their lives, often with zero symptoms. But today we got a hallelujah to share: The New York team called today with good news as we go into scans tomorrow. Charlotte’s bone marrow biopsy results came back normal!  It isn’t just evidence of Neuroblastoma they look for but also other signs of disease and cancer that can develop due to the harsh treatment. We know it isn’t just cancer our girl is up against. So, we get to let one breath out that her bone marrow is still clear of disease. Tomorrow and Thursday are scans and clinic.

Last week, Charlotte received the final 7th injection for the NB Vaccine trial. I’m not sure that has sunken in quite yet for Brian and I because our eyes needed to go directly to the scans this week. With her scans being delayed, the anxiety has hovered over us for a bit longer. But last week appointments in NY are another huge victory IF her scans this week reflect no evidence of disease that we are praying for. I have more to write about it all and will do so once I catch my breath so for now I’ll keep this short and sweet. Keep those prayers going for her this week. Today she received her MIBG tracer injection which will pick up pockets of Neuroblastoma present in large enough quantities. Tomorrow she will have her CT and her MIBG scans. Thursday will be her head MRI and clinic. We should have results then. We feel every single prayer. I’ll close with a little light hearted piece from our NY trip last week:

When you travel with someone, it’s inevitable that you learn something new about them. Every time we go away together, even though it’s because of circumstances we wish we were not a part of, we get some pretty special time together and I get to see her in a different light, often learning something new about our special girl. This time I learned what I can only describe as Charlotte’s “art” to eating an Orio cookie. I learned it is absolutely impossible to whistle while smiling (Charlotte’s a great whistler if you didn’t know). I learned she is quite a versatile conversationalist, confidently able to carry on quite a conversation with many different ages and walks of life. I learned that she is now able to take notice and feel pride in a personal accomplishment.  And finally, I learned that she believes God comes along side of us all wherever we shall go—

We were at the dinner table at RMH waiting for buffet to open. A little girl, maybe 7, sat alone at the table across from us waiting for her mom who was cooking for her in one of the little kitchens. She was making a traditional Asian meal of some sort with noddles and shrimp and broccoli we noticed. Charlotte was staring at her while she was taking tiny little gems out of a felt draw string pouch. She was examining each one and laying them out. After a moment she noticed Charlotte watching. Without a word or even expression, she reached for a small emerald green gem and walked it over to Charlotte, placing it down in front of her. She walked back to her table and resumed admiring her little toy gems. Charlotte’s eyes grew wide and she beamed! “Look Mommy! She gave me a gem!”, Charlotte remarked in awe. “God must have wanted her to do that, huh?” She continued as she admired her new treasure passed down from this stranger child here in this place in time with us. I caught my breath at that remark. “Yes I believe he did. Maybe she thought you could use a smile. Maybe she knew you were afraid of the pokes. Maybe she knows you are far from home too and missing your family.” Charlotte brought God with us. She always does.

 I crave “normal” life again because I don’t want her to go through any more...but that one on one time while hospitalized at Duke or traveling away to different cities like Philly and NYC for treatment has been some of the most precious times together. When time seems to be suspended, everything else going on in life laid aside. I’ve cherished walking along beside her. She embodies God’s grace.

A gem she brought home from preschool and dictated to her teacher. Yes she is!

Also, saving place at the bottom for some rainbow pictures because y’all we got a rainbow in NY and a HUGE one across the sky after NYC, on our way home from the airport in our home town! (won’t let me upload a the moment). Rainbows continue to follow her