Moving forward: back in NYC

By -


“Keep going. That’s all you have to do, ever. You really don’t have to be amazing or fierce or beautiful or successful or good. Just keep going. Slowly is fine. Crawling is fine. No feeling is ever final. Except hope.”
-Glennon Doyle

Her remarks spoke to me on so many levels. Maybe they speak to you and so I’m sharing them. And the good news from us is that Charlotte keeps going, keeps moving onward, forward. And I’ve stopped worrying about the pace because slowly, as it turns out, is just fine by us.

We just arrived in NYC today for her round 5 of 7 for the Neuroblastoma Vaccine for maintenance trial. We flew this time and that went very well. We are still staying at a nearby hotel arranged by the Band of Parents as RMH is still not accepting new families. Both of us went in today for COVID testing (or as Charlotte calls it “tickling our brain”🤣). Tomorrow she will receive her 5th vaccine injection and then Wednesday she’ll have a 4 location bone marrow biopsy for routine surveillance. We should be able to fly home Wednesday night. Children’s Cancer Partners of the Carolinas has again arranged our flights. So many special organizations helping us along the way❤️🌈

As for Charlotte, she is doing remarkably. She is growing and blossoming and feeling great. She initially cried when we told her about this trip, as she tends to do when our dream world is awoken again by Charlotte’s cancer. It’s hard when the long break comes to an end, but as I held her while she cried, a double rainbow formed right over our home. My cell phone started binging with notifications from neighbor friends and I told her that God was listening and giving her a hug. She nodded behind her tears and then in true Charlotte fashion, asked to go take a bath bomb bath🥰.  Our mermaid, our brave and sweet warrior, is and will keep going. We are so grateful and as hard as it is to ride this rollercoaster, we promised God that we would do anything and never complain a single moment of it if we could continue moving forward in maintenance, leaving active treatment far behind. And so here we are. Back in NYC with a hurricane looming in our path. Tomorrow may be interesting and I’m still unsure the timing of this storm and how it will affect us actually getting to the hospital which is about a mile away for our 1pm appointment. Thank you for your prayers for this round and for always❤️🌈

(Having photo upload issues tonight so I’ll update more tomorrow. The picture I could upload was from just last weekend where we went on our first camping trip and Charlotte caught her first fish!! More updates tomorrow including something special😍)



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