Charlotte's Journey

For 2 and 1/2 years we have been searching. Searching for answers to questions about how we can help Charlotte during therapy and after therapy. For 2 and 1/2 years, we have been in fight mode. Fighting even when it appeared to all the world who doesn’t know Charlotte that all is “normal” and well. For you can’t tell by looking at her or talking with her that she had beaten down Stage IV cancer and was on a clinical trial aimed at preventing it from returning. Even through every sweet victory that she claimed during these 2 and 1/2 years, Brian and I were still searching and seeking. This was never ending. We kept learning not only about what she was going through, but about what we needed to do next to help her. What else was out there? This seeking and searching. This never ending part that comes with being the parents of a child like Charlotte. This chapter of our journey helping to heal our baby girl has come to a close. This is hard to say and even harder for us to grasp bu

We may be sitting exactly where we prayed so hard to be, with a thriving Charlotte who currently has no signs of cancer, miraculously no evidence of any major health problems related to treatment, and yet we sit precariously. We sit here uncertain. Charlotte’s disease has so many uncertainties even now that she has successfully finished frontline treatment. It is these risks and uncertainties that brought us to press on, seeking the Vaccine study in order to help combat disease that may resurface in these children. The same uncertainties we acknowledged a year ago are still hanging over us, tipping our balance and creating the unsettling feelings that Brian and I simply live with and accept as our new reality. The stomach knots that come and go, the sick worried feelings that surface and dissipate, the uneasy acceptance at times of what appears to be normal life ready to be lived again. This is our reality and will be so for some time. So, how do we know which decisions we make are ou

Has it really been 2 years now since we were there? During our days that spanned over Sept 2016 through Jan 2018 while on 5200, Duke’s Pediatric Bone Marrow Transplant Unit, Brian came every single Tuesday around noon to come have pizza lunch that was donated by a family we never met. It was a saving grace, this pizza. Brian and I could eat together, which was rare.  We could sit with Charlotte in her room, which was necessary because of what she was going through we didn’t like to go far from her. And we could share a meal provided at the same time on the same day every week. Together. That’s how we did any of this, together. There was a family who gave this gift to the families going through the unimaginable. And, it was PIZZA! I mean, who doesn’t love pizza?! So, when we learned that the PBMT was in need of a new Tuesday pizza sponsor it seemed fitting we step in! And so we will be honored to give back in this small way with the hopes that this gift helps any of the families in so