Ring this bell

Three times well,

It’s toll to clearly say

My treatment’s done,

This course is run,

And I am on my way.

 

Saturday, November 25th, 2017. It’s been just over two and a half years but I remember as clear as yesterday. Colin and I were stringing Christmas lights on the garage when I got the call from Teresa. “Drive to Children’s right now”. That’s when I felt the sinking feeling in my gut and for some reason just knew.  Teresa brought Nora Downtown St. Paul to be checked out by a doctor because she’d been sick and developed petechia. Colin and I arrived and saw Nora hooked up for her first time. The doctor pulled Teresa and I out of the room and gave us her diagnosis. 

 

Wednesday, June 10th, 2020 will be another day we will never forget. Nora proudly and loudly rang the bell to mark the end of her treatment and the beginning of her next stage of life.  We’ve walked past the bell at every appointment, both at her Minnesota Children’s Hospital and Plano Children’s Medical Center clinics. Whoever came up with the idea was a genius. The thought of this day and ringing the bell has been a constant motivator and challenge, something we all couldn’t wait to do. Nora totally earned and deserved the right to take center stage and own that bell. 

 

The last few months have been filled with long-awaited milestones. Nora had her final LP procedure in clinic with IT and IV chemo, she took her final in-home dose of chemo, finished her last round of steroids, and underwent surgery to remove the port implanted during her first-week long hospital stay. We’ll be wrapping up her regular antibiotics in the next week now that she’ll no longer be immunosuppressed. We almost escaped the 2-year long maintenance cycle of chemo without her losing her hair again. It was the day after her last chemo dose that Nora’s hair started falling out for the third time. It’s slowed and only appears thinned out for now.  I’d be whipped by all of this, but none of it has really ever phased Nora. She’s definitely had extremely hard days and long weeks, but, throughout this whole process, she’s been amazingly resilient. She’s faced every med dose, appointment, needle and procedure with bravery & courage. I honestly think she could sleep through an arm poke at this point.

 

Nora’s been active and enjoying her summer. She learned to ride her bike without training wheels and can keep up with Colin on long rides. She’ll start kindergarten at the end of August and is very ready for it. She’s too smart for her own good sometimes and comes up with the quickest comebacks and funniest sayings. We still like to bake together so I started calling her “sugar”. It wasn’t a split second later when my new nickname was born, “vanilla”. I was hoping she would forget that but it’s been about a month and I’m still “vanilla”... I guess I’m okay with it because she says my blueberry muffins are “spot on”. 

 

While we’ll still have regular monthly post-treatment visits for the next several years, we’re considering this our end-of-cancer moment in time. We truly appreciate everyone following Nora’s journey, your prayers, and words of encouragement. We’re also indebted to Nora’s doctors and nurses that quite literally saved her life and led her to recovery. Not to mention, all of the patients before Nora that have helped pave the way and make today’s cancer treatment and outcomes better than ever. Including Nora’s Great Aunt and Great Uncle. There have been a lot of amazing people and organizations we’ve gotten to know and who helped us along the way. Nora told me once she was happy she was a cancer kid because otherwise, she wouldn’t have met Sadie (Nora’s hero and fellow ALL survivor). Teresa has been actively working to reciprocate and help other cancer parents through their journeys.

 

This will be our final CaringBridge post. We’re ready to start another new chapter in life, in more ways than one. In addition to Nora’s next phase, I accepted another job with Ecolab, so we’ll be moving to Houston this summer to begin a new family adventure. 

 

Sometimes, real Superheroes live in the hearts of small children fighting big battles. -unknown

 

Chris