Round 6 of 7: Bacon Grease, Piñatas, and Why

Charlotte had her 6th of 7 Neuroblastoma vaccine injections today as part of the clinical trial at MSK in NYC.

“Her labs are perfect. After today, I suspect we will see you all back here in September. Plan to stay an extra day for Bone Marrows, and, also I’d like to schedule a long term survivorship clinic appointment for her during this next visit too .”

I could have burst into tears right then and there. Instead, I smiled and nodded and took a big gulp, I think. I know this is no guarantee. None of this is a guarantee. We cannot know if Charlotte’s cancer is truly gone, not yet. We cannot know, not really know, that she will survive. But in the same breath as scheduling her LAST injection of this clinical trial, the Nurse Practitioner said the words “survivorship” in talking about Charlotte. This is the first time we’ve heard those words. They had weight to them.

We have scans at Duke in 6 weeks. If everything looks as we hope and pray it still does, then she will have the first summer off in 2 years from any treatment. We would go back to Sloan Kettering in September for her last injection and bone marrow biopsies and (I can’t believe I’m saying this) her first long term survivorship clinic appointment. We know we are still several years away from being able to say Charlotte has beaten Neuroblastoma. We are still living in this middle zone of no cancer detected. But, we CAN say she is still going strong y’all. And we can keep praying with all of our hearts that she will keep going, keep moving.

Today was hard. They all are. I don’t want to make it seem like any of these appointments are old hat even though in a way they are. Have I told you what this injection feels like to her? Older kids describe it as hot bacon grease being injected into them and it keeps on boiling under their skin. Charlotte tells me it feels “like hot blood bleeding that won’t stop”. Before the injection, they poke her tiny veins to give her a peripheral IV to keep in for the day so that they can draw 5 large vials of blood for tests and also to administer emergency medicine should she have a rare adverse reaction to the vaccine injection. Because of this, blood pressure is monitored very closely. But the injection itself is very painful. What that looks like is a cherub faced Charlotte looking helplessly at the reality in front of her all while asking why all of this has to hurt her to help her. How does

one explain the benefit of pain to a 4 year old? You can’t. So instead, you fake that knowing smile you’ve mastered by now and hold her while she cries and close your eyes as she screams in pain and let her squeeze your hands and remind yourself you won’t have to help hold her down forever. Because maybe, just maybe, she will be one of the blessed that moves into the Long Term Survivorship Team’s care. It’s still a long way off until we know, but when you see your baby in pain again and going through more of what you would take from her in a heart beat, you need to believe in the madness of all of the “whys.” And being in anything with the name “survivorship clinic” in it just sounds like a huge victory to us. Sign.Us.Up!

I briefly met a mom and her little girl Nori, who was dressed, to Charlotte’s envy, in Snow White gown PJs. She is 5 and battling the same cancer as Charlotte. They found out at her 6th injection and scan work ups that her cancer had returned. She went back into treatment. She is still fighting. The frontline treatment and the vaccine did not work for her. They are attempting a new road with new meds and a new journey. There are still woods, deep dark woods all around us. We are not out. And worry, worry that cannot be described but thankfully at least comes in waves so that there are lulls that give us grace. And, there are so, so many whys.

Please God, let our baby girl have a free summer. Let her scans in June be clear. Let this vaccine be coursing it’s hot bacon grease way throughout her little body in order to teach her immune system that Neuroblastoma is the enemy and must be destroyed. That is will provide long term coverage to prevent relapse, or at the very least, it isn’t causing any harm in her. Being at this point post-treatment is a real victory and we feel it. We are so humbled and grateful to be here. We know nothing is guaranteed. Getting to September will be a HUGE milestone with both the completion of this trial and 1 year off treatment. We still have so many more decisions to make and many, many uncertainties lying ahead. Let us keep following your guidance, often in the form of our little Charlotte who has been lighting our way all this time. Oh Lord, there are so many whys in this journey and I know we won’t always know all of those answers for sure. But for today, our whys and Charlotte’s whys will happily go unanswered. Why? Because yesterday, at the amazing NYC Ronald MacDonald House, we ate a delicious Mexican dinner (courtesy of some amazing NY group) while a 3 member Mariachi Band played, which of course prompted Charlotte to dance right then and there along with a little friend Jacob (from our home hospital of Duke who was coming for his first vaccine injection after completing additional treatment for disease progression after frontline therapy), and then we proceeded to have a piñata dance party in their basement playroom. I mean, in the midst of itall, we felt like we were at a huge party! Charlotte dressed up in a play princess dress and grabbed my hand and we danced and laughed and beat a piñata and ate its candy sprawled across the floor. In that moment, I could have asked, “why God?” But, I think I know the answer to that one.❤️🌈

Y’all these pictures are not from this trip because this website is being difficult and not letting me load today’s so I’ll post them soon but here are some cute recent ones and I’ll attach a couple videos of Charlotte being Charlotte on this trip to NYC for round 6😄