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(Written 9/29-I was having a hard time uploading from where we were and for some reason my photos still won't upload so will update this carepage again when I figure this out. We are home and she is doing well after the first injection and what was written about before. I fly back up with her Wednesday for injection #2. Tomorrow, she gets to go back to preschool😊❤️🌈)

My heart sank. I thought the study was much larger. They've been studying this vaccine for 6 years now and for the last 2 years now it has been available to kids like our Charlotte who have reached remission after frontline therapy. They like to use the word "first time remission" around here and my heart sinks further. They say this because there are many many more kids who have relapsed and have under gone further treatment and brought back to remission again. There are many more of these kids, around 100 now, who are getting the vaccine as well but 38? 38 like Charlotte. I just thought there would be so many more. 

I just never could have imagined we would enroll one of our children in a clinical trial. And that on this entire planet, only 38 other kids would be grouped with our child. Only 38 other children like Charlotte being followed for side effects and results in kind. I keep asking how this is possible and then I realize that is a useless question and mindset. We are blessed to be here at this point and we know this. I want her to be done with treatment and yet this new technology is here and we feel drawn to continue in order to give Charlotte the best chance. 

We met Isabella who was diagnosed at 2.5 like our baby girl and now she is 10 and still fighting. There is another family here we met and their daughter is going through treatment for relapse after 2.5 years in remission. Her name is Charlotte and she is 8 and she has the same rainbow light up shoes as our Charlotte. But our daughter is not in her shoes. And we want to keep it that way.  Brian said it right. He said it wouldn't  matter if Charlotte is the first child to ever receive this treatment as long as we believe it is the right thing to do, as long as we believe it could give her a better chance at truly beating this. I know this in my heart. I just need to keep reminding myself when doubt and fear start to rise. At the end of the day, I am still just a mother sometimes frozen in place while a busy hospital buzzes around. At the end of the day, we are still just scared but hopeful parents trying to do what is best. Please God. Please help us know you have guided us here, led us to this place where we are meant to be. Please let our daughter grow up and look back and say, "My parents gave me every chance and God did the rest." This is what I repeat at times with my eyes closed. Because when your child's life is in your hands and you have actual choices now in front of you, actual forks in the road and you are the one to decide what to take...that responsibility is a heavy weight. It is an overwhelming emotion. But it is also a God given gift. God gives us children so with it he must equip us with the necessary tools and wisdom to care for them, right?

So, again today, I held her down while they put in her peripheral IV for "just in case" they need access if lord forbid she has a reaction to the vaccine. And we held her tight again when they gave her the first dose as a shot into her cubby little thigh. And Brian and I walked next to her, even though she wanted us to carry her, taking her hand to help her walk because we were told walking it off and movement would help the pain at the site. We will do this again next week, and then again the following week for a total of 3 shots in 3 weeks.  Then we will do this 4 more times spread out over this year. And she will also take an oral immune modulator medication (Beta Glucan) periodically to help this vaccine trigger the appropriate immune response and attack any cancer cells they are trained to target. And then, after a year, we will be done with this trial. 

But today, Vaccine 1 of 7 is in the books and we turn towards home tomorrow. Being surrounded by so many other kids and their families still fighting this disease, most battling relapse, has been humbling and eye opening. I lied awake doubting our decision last night. At the end of the day, we are just worried parents trying to choose the least terrible option among choices where there never seems to be a right answer.  Today, witnessing what we did, reaffirmed why we feel this trial is important for Charlotte to succeed in staying cancer free. I knew then it was God speaking to our hearts like he always has. So now we don't look back. We keep our girl going forward, moving towards the rest of her life.