Bittersweet Day

By -

It was a bittersweet day, village. Our warrior had her hearing aid molds made today and picked out her colors. She chose nude to blend in with her skin and hair color as she decided she did not want it to stand out. They should come in next month. The good news is her hearing loss has stabilized! The aids will help her not work so hard at hearing the higher pitch/frequency sounds as well as language when there is background noise and now in today’s world: masks. She loved learning that they will be like her own AirPods as they have Bluetooth! She will continue first grade virtually for the remainder of the year, as will her brother and sister. Brian and I debated all the pros and cons for quite a while before the deadline to decide smacked us upside our heads today. In the end, we decided we have the opportunity to allow Charlotte’s immune system to FOCUS on the immunotherapy that this Neuroblastoma vaccine trial promises. We can help try to keep her immune system strong and focused on making antibodies against neuroblastoma instead of anything else, so that trumped going back to school in person at this time. I really struggled with this for a while but the truth is...all THREE of them are happy and in a groove with this virtual academy they have been a part of this year. Our hearts just didn’t want any of them, especially Charlotte, to miss out on sweet childhood and being with their peers. Charlotte fought so hard to get there! Finally, next week Charlotte has scans again. We hold our breaths once again but we are feeling hopeful they will continue to reflect our prayers! Thanks for your continued love and prayers for our little girl and our family❤️🌈#Charlottestrong


Taking her hearing test in this sound proof booth but this time I noticed more independence and ownership. She’s growing up. Thank You God
Charlotte said she made a manta ray out of one of the ear mold materials🥰

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