Clear Scans!

By -
Charlotte's MIBG and CT results are in! Her scans show no evidence of disease. We are still waiting on bone marrow biopsy results but Dr. Driscoll is confident they should reflect her scans and also be clear! We feel like we can take first deep breath in a long time. We are so grateful. Grateful for your prayers, for the medical team, for our family especially Schuey and Neal, for all of our neighbors and friends and village, for Charlotte's response to treatment and her beautiful spirit blossoming in spite of it all, for Gods grace and mercy and love.

Our baby girl has had a long day here at Duke as she is having many different assessments performed today. We have spent the entire day at the hospital for 3 days now taking all the steps required to begin the next phase of her protocol: immunotherapy. She's currently sleeping peacefully in the stroller as we finish a once a month prophylactic infusion she needs. As I watch her sleep, I am so happy that SHE has this victory. I'm so happy that she gets the simplest reward of getting to go home later today and be a kid. To play with her siblings and be with her family. It's really all she's ever wanted. But her dreams will and can get bigger...if she wants. Because we can keep going so that she has the chance to grow up and dream whatever her little heart desires.

Daddy came for a little while today and helped her conquer one of her fears: the pulmonary function test. She has to wear a mask and breath as hard as she can to measure lung output. Today was the first time she was able to do it without hysterics and passed with flying colors. She has grown and matured beyond measure

A little music time as we wait



Resting like an angel here on earth

Saying goodbye to Our Rocks. Nana Schuey and Poppy are heading back home in their RV to Arizona after being out here with us for 11 months!

Comments

Post a Comment

Popular posts from this blog

ROUND 2 under way

By -
Image
It was exactly 4 Monday's ago. We left our pediatrician and ended up here at Duke Children's just about this time of day where we were about to receive Charlotte's cancer diagnosis. It was any parents worst nightmare as we came to learn and understand this diagnosis. It feels like 4 months ago. We are still coping and feeling our way, but never in a million years could I imagine being in this "place" that we are today, emotionally and spiritually. We are still coping and going through the grieving stages, but hearing the news today that Charlotte is healthy enough to begin round 2 was great news. A couple weeks ago, hearing that your child needed chemo was gut wrenching but today it is music to our ears. It means Charlotte has recovered from round 1 and is ready to continue to fight and heal while we all cheer her on. Her spunky spirit is back. She had a wonderful, restful weekend home playing with Taylor and Parker and also getting to see some family and a few f...
Read more

A fresh start for round 3

By -
Image
You know those weekends that you just don't want to end? The ones you want to freeze in time? It was a simple one and usually not even worth a mention. Because all we did was spend time together playing at home, saw some friends and family, enjoyed each other, just low key fun and quality time. It was just one of those weekends that we all usually take for granted and really WE SHOULD. I mean, as parents, yes, we all try to soak up the sweet moments and memory making times with our children. But we shouldn't have to relish every moment where our children are feeling happiness. We shouldn't have to soak up every day we can all be together. Or embrace each day our child feels healthy enough for normal play. No one should have to live their entire lives living in the sweet moments for fear it could all be pulled out from under them. But we are learning that this is our new reality. That the normalcy we use to take for granted is now precious time because as we travel down this...
Read more

Reliving June 13

By -
Image
Today in 2019, was probably the hardest day of my life. You might have thought that would have been the day she was diagnosed or maybe that scary time we had during Charlotte’s transplant, but it was today. We snapped this picture below waiting for Charlotte’s doctors to come into her examination room during her standard check up at Duke. Mere minutes later, we saw more than the normal 4 feet in front of the door (the oncologist and NP that would see her). When the door opened and child life was there—Brian and I instantly knew. Child life had come to distract Charlotte so we could talk to her doctors. The world went into slow motion and I don’t know how I didn’t hit the floor if I’m honest. Brian’s face instantly drained of color. We knew immediately her scans had shown her disease, her cancer, had returned.  After all she had been through, all we had seen, all we had survived as a family…this day drained the hope out of me and I can still have a visceral response remembering it. ...
Read more