Charlotte's Journey

THANK YOU for your prayers for Poppy everyone. Schuey andNeal, as do Brian and I, believe in this power and they have felt it first hand once again. It looks like Neal is making a full and quick recovery. He is now back home even and we drove the 2 hour easy stretch for a quick visit and couldn’t believe it when he answered the door! Knowing he is still recovering, we didn’t stay too long and brought our brood back home for bedtime. We wanted to let you know and to thank you all once again for surrounding our family in prayer this Christmas season and always. As for our Charlotte, she is doing amazingly. She is vibrant, full of life and energy, enthusiasm and pure joy. She is truly funny, but also we can see such a tender and generous nature developing within her. She often relays profound wisdom coming from a space within her that has to be God sent.  She had a wonderful Christmas home here with her Taylor and Parker and Brian and I. Every season feels like such an amazing blessing,

Charlotte, Parker, and Taylor’s grandfather Neal, whom we lovingly call Poppy, has been hospitalized. We don’t know anything yet but I knew if I reached out to Charlotte’s prayer village, you would all lift him up just as you have done so many times before. I have seen the power of your prayers. Yesterday, Neal was reminded of Charlotte during a part of one of her hospital stays, and he pulled out her picture and remarked out loud “Charlotte will help me me be strong.” This man and his wife, Schuey (Brian’s mom Nana Schue), packed up their whole world’s and moved here for a year while Charlotte was battling cancer. They helped care for Taylor and Parker and our dog Lucy and helped with many other things so that Brian and I could focus on Charlotte during all those months in patient. We remember spending Christmas Eve and Christmas in the hospital with her. And now Poppy needs our prayers. Lord we trust even when it is so hard, when there are no answers or rhyme or reason. Please help t

When I picked Charlotte up at preschool yesterday, she was beaming and told me to bend down to her level. I crouched down and she put her arm around my shoulder, “This is how me and Eliana walked today on a nature walk. And then we played we were cats!” With her little red preschool bag drooping off her little shoulder, she skipped off ahead of me full of joy and confidence. In that little red bag today was 2019-2020 school information and I started realizing that next month we will be signing her up for kindergarten. Her teacher emailed me this picture tonight, showing the image that Charlotte herself actually painted for me in her recap of her favorite moment of the school day. This little girl and her family doesn’t know Charlotte’s story. You can’t see her scars or battle wounds. She is such a gift and as much as I feel a little pain knowing she is about 1/2 way through her last year home with me, I am also equally beaming with pride that we can talk about her starting school and t

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

There are 2 children back in their fight against Neuroblastoma that lay heavy on my heart today and if those of you in our own village could please take a moment to lift them up in prayer as they both await scan/biopsy results today?  Azalea is the little girl Charlotte made a couple videos for to help her take her oral medication that accompanied this vaccine trial. Charlotte helped cheer her on as Azalea was afraid of this medication. She was about to get her final injection when the team discovered she has relapsed after almost 2 years clear. Lincoln is a little boy the same age as Charlotte who we also met up at MSK in NYC. He was going through the antibody treatment up there when the team discovered he relapsed and is back in treatment getting more chemo, but new symptoms have suddenly appeared and the team has ordered an MRI of the head for fear his disease has progressed.  At the moment, Charlotte is carrying on in life as she damn well deserves while Brian and I are in talk

Last week, on October 18, Charlotte turned 5! Charlotte was a surprise. She was God’s better plan, better then we could ever have imagined. God still continues to show us he has a plan bigger and better then we ever could imagine. She’s a gift to us and to so many. Looking back over the last 5 years brings a proud happy tear to me and Brian’s eyes. She’s fought for this year, this day.  For her birthday, Charlotte wanted to go to a pumpkin patch to pick out pumpkins and play with her brother and sister, and have Chic-Fil-A for dinner and so we did 😆! Brian and I converted her toddler bed that was once even Taylor’s crib into a full size big girl bed, and we transformed her room into a big girl room with rainbow decor of course! Then, she had a birthday party over the weekend with some of her little friends and her cousin Evan who came to visit with Uncle Tim, along with some of her grandparents! She wanted to have a dress up party so kids came dressed as super heros and prince