Charlotte's Journey

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 Charlotte was full of playful energy! 

How many times have Brian or I walked by Charlotte's empty room at night? How many times have one of us tucked in 2 kids but not the 3rd? Heading up to bed only to pass by her room, door open with her girly white ruffled curtains drawn showing the moonlight across her floor. Her bed empty because she is sleeping in the hospital. Brian and I have done this countless times this year and a half while one of us is home with half of our family and the other is at the hospital with Charlotte. Tonight, as I headed up to bed, it occurred to me that this is the LAST night I will walk by her empty room while she sleeps away in the hospital with Brian. Tomorrow will be Brian's last night walking by her empty room because she is a cancer patient being hospitalized for treatment. It's true she may travel to New York for outpatient appointments and we may be apart periodically as we pursue what may be best for her long term care and outcome. But all that is part of the victory dance of

And she's off! Her final infusion of her antibody therapy begins today. We checked in yesterday for her final inpatient round! She was full of energy too. We checked in, got labs drawn and took a pass to leave the unit and go explore outside. We ate dinner in the courtyard. We "hunted dinosaurs"...she even roared at a few passer bys 😂. We played chase and hide and seek, and then came back up to 5200 and she wanted to ride all the riding toys. She saw our Austin's bike. She always had been afraid to try it but this time, she walked right up to it and asked "I ride Austin's bike?" "I think he'd love that" I said. "He watching from heaven?" She asked. "He sure is. He'd love you to have some fun on his bike." And she climbed on and smiled proudly at being on his big boy bike, and said "Hi Austin!!" She happily and proudly rode in up and down these halls we now know so well.  I flashed back to the days they bec