Charlotte's Journey

As my brother Tim, his wife Esther, and my nephew Evan sat on a NC beach yesterday enjoying a family vacation with some of their extended family, a rainbow appeared in a mostly cloudless sky when it hadn't rained in many days. They snapped its picture and texted it to me. While receiving that text picture, I was currently confirming Charlotte's appointment to have her central line removed. God's timing never ceases to amaze. His blessings and love shared with us from so many of you over this last year and a half. And this momentous occasion was no exception! Since Charlotte's last check up looked so positive, Brian and I decided to send an email to her doctors on Sunday asking if they could see any reason we hadn't thought of that Charlotte's Central Line should remain. After all, lab draws in a couple weeks would only require a simple prick and her scans in September can be done via peripheral IV. Surly those are not reason alone to keep her tubies any longer...

They have transitioned us back to Duke hematology/Oncology for Charlotte's care. Today, she had her first check up clinic appointment with them since August of 2016! Bye bye Duke PBMT! With every advancement, we see the light at the end of this tunnel. Although it really hasn't been a tunnel as much as a path. And now her path is coming to an intersection where we will hang a right onto Post Treatment lane very very soon! Today, we had a small milestone worth mentioning. She had a site reaction to the little catheter in the back of her arm where we were administering these shots at home from time to time during this 6 month course of immunotherapy. So, I ended up having to remove it and give her her final 2 shots in her arm. Today, was her last shot! Today, was hoping the last time Brian or I are the cause of the look in her sweet face when we have to come at her with a needle. She often asks why a nurse can't do it. Or just tears behind "why mommy why?" But thi...

I would never want to change one part of this last year and a half. What a strange thing to say, isn't it? I mean who wouldn't want to go back and take away what Charlotte had to go through. Why wouldn't I want to change this last year and a half so that she didn't have to fight every single day to grow up? Today, we were driving in the car to run a simple errand and she began to sing me a song. That song rang throughout every fiber of my being. It was set to the tune of "You are my sunshine, my only sunshine" except with her words of love. She sang I love my mommy, I love my daddy. She sang about her whole family. If I were to change a single thing about this last year, I would change the journey who has helped shape who she is. I would never want to change a single thing about her. To change her story, is to change her. Just listen to her. She is pure love After a few moments of hearing her song, I hit voice memo record and it actually recorded her on my c...

There have been 2 coolers on our front porch since mid March of 2016. That was when Charlotte was hospitalized and diagnosed. Several friends and neighbors came together to brainstorm what they could do to help us. Among many things, the Meal Train was formed. They could never have known this, but this Meal Train that became what I lovingly call "the worlds longest train", also became something else... They started this Meal Train website so that people could sign up for dates to bring a meal or even a grocery run. They placed 2 coolers on our front porch to serve as a hot and cold cooler for meals and food. These meals and grocery runs have gone on for SIXTEEN MONTHS. For 12 of the 16 months, meals were delivered every Monday, Wednesday, and Friday with grocery runs a couple times a month on a Saturday or Sunday. The last 4 month we trimmed it down to just the weeks inpatient but nevertheless...the people have been thoughtfully, generously, and lovingly bringing these meal...

Letting this confetti parade video and the pictures speak for themselves. It's hard to find any words. God we are so grateful❤️🌈 Confetti!!  So grateful to Nana Schuey and Poppy for all their unending support and time they have been with us  Some of the Duke PBMT staff here today  Charlotte's Rachel Charlotte's Lauren. 2 of our nurses she's bonded so much with. Our warrior Moving out of our room... My world here in my arms    Saying goodbye to our fish friends with a swim 😂  Last run down the tunnel!!  Out to lunch to celebrate but our sweet girl fell asleep in my lap A few more pictures of her last several days here inpatient!  Goodbye R2D2  Chocolate cover strawberries in bed for dessert to begin the celebration  Racing with Elise  A visit from Deborah. She has come so many times over the year to sit with us or be with Charlotte but today Char...