Charlotte's Journey

 I have some updates of our own but for now I wanted to write this quick update on Elijah as some of you have been asking.  How amazing it is to see the scope of care that has been extended from our village to him. Anyone who has followed most if not all of our own Charlotte’s journey knows the yo-yo one can be on going through this. But I’m not sure I’ve ever seen a family go through as much uncertainty and bear the burden with as much grace as Elijah’s. The recent scans came back so hopeful as they were not what they expected them to be. Instead of showing progression and major metastasis, they showed minimal disease and stability. The family was in shock and felt a miracle could be happening. And maybe it still is...but his mom has reported that the tumor in his jaw is now growing back and fast. They can visibly see it again. His Neuroblastoma has been stubborn and they fear it is resistant to the existing conventional therapy. They have decisions to make that I cannot even fathom.

It felt like we’ve been asked to walk across a tight rope without any training or practice. The expert tightrope walker says to us before we walk across, “Here is an extra rope. If you take it, should you fall then it could save you. But, if you take this extra rope then there is a chance this rope could make you sick and cause you great harm. You might not even need this extra rope at all because you might not even fall.” Furthermore, when we ask this expert tightrope walker what would they do? They answered “no one can know the right answer. No one knows your outcome.” I’m only just now able to sit and update. Things haven’t been sitting so well with us after the sudden decision required by last Friday and the enormity of it. I think I can speak for Brian as well, but this was the hardest decision we have had to make. Most of our other decisions up to this point seemed intuitive. They may have been hard, but they felt right. But deciding whether or not to enroll Charlotte on this cl