Nora’s Story

Site created on June 27, 2018

We entered the battle of our lives on June 19th, 2018 as we found out our healthy 2 year old babygirl had an aggressive cancerous tumor on her brain. Our first round of prayers were answered as we learned her surgery was successful and got the whole tumor out.  We learned the type of brain cancer she has is very rare and very aggressive. It's called ETMR. We honestly feel like being at Colorado Children's Hospital is the top hospital to be and we have already received top notch care and will continue to do so. We are asking for all of the positive thinking and prayers imaginable to surround us as we enter the next phase of our battle: aggressive chemo and bone marrow transplant. 


I will be taking the year off of work and Alex will be dropping down to 32 hours a week. We also found out that 6 weeks of our treatment will be done in Cincinnati during which neither of us will be working and will have extra cost of living expenses to figure out. If you feel so inclined, here is a link to our gofundme site set up by our dear friends. We promise to pay back by way of volunteering and spreading good energy back into our community.


https://www.gofundme.com/nora-jean-the-fighting-machine


#norajeanthefightingmachine

Newest Update

Journal entry by Caroline Andrew Dane

First thing is first: Nora is blowing everyone away with her strength and progress. As her mom, I’m obviously always impressed, but the entire neuro-oncology team that works with Nora continues to be amazed at what she’s capable of. She’s handled the last 2 rounds of chemo like a champ- no nausea, fevers, mouth sores, or hospital stays. Her mobility has surpassed what I thought she would be capable of while still in treatment. She wears her brace/boot regularly and can borderline run with it on. We are in the middle of intensive occupational therapy that will last for 3 weeks to help her regain strength & coordination in her left hand- we’ve already seen so much improvement! She’s truly a miracle. Her next big scans are this coming Thursday (2/21). We are expecting good news but would appreciate the extra prayers! 



It’s been hard for me to get started on this update, not because I have bad news to share (quite the opposite really), but just because my emotions didn’t seem to match Nora’s current progress and daily victories. I should be so happy and thankful that my baby girl is defying the odds and surpassing everyone’s expectations (and obviously I am), but that doesn’t change the fact that my sweet girl has been dealt a pretty sh*tty hand and the effects of that ripple out to so many lives- mainly the lives’ of people I care about. Being a cancer family has more crappy layers to it than is imaginable; layers that I’m sure will continue to be uncovered as we move forward on our journey. But at the end of the day, I’ve got my girl. Grateful barely begins to describe how that makes me feel- but if I don’t stop every once in a while to acknowledge the fact that our world was completely rocked and it’s so unfair, I start to go crazy... like a ticking time bomb. It’s so hard. 



Endurance has always been my thing; it’s in my blood. I put my head down and keep going. I put a smile on and find the positive in unfavorable situations. Obviously, it’s been a helpful quality to have in my current situation, but man has it been necessary for me to stop & take a breath. And feel. Because yes, Nora is kicking a** & taking names. We are already at week 31, only 20 weeks to go! But then what? Nora won’t go back to being her pre-cancer self when treatment ends. Her limp and left-sided weakness won’t disappear. Therapy will continue. The tumor cavity that received proton radiation on Nora’s scalp won’t start growing hair again (ever). The late effects of chemo and radiation may not show up for years to come. The anesthesia and scans will continue every 3 months. Nora’s likelihood of getting a secondary cancer from her treatment are significantly higher (not to mention the fear of her primary cancer returning). She’s endured so much already and went from being a “normal kid” to “the different kid” overnight. My once fearless, outgoing 2 year old now has extreme anxiety around meeting new adults or going new places. It’s slowly getting better, but cancer doesn’t end when treatment ends. We will continue to live with a dark cloud looming, which is just another crappy layer of this cancer journey we are uncovering; another part of our new normal. 



I have no doubt that we will adjust and find more beauty in our lives ahead than we ever would have without a cancer diagnosis, but I have to allow myself to stop and feel the heartbreak first. It gets me back to recognizing how much we have to live for. Sharing my truth & heartbreak has been so cathartic for me. Thank you for allowing me a space to do that. The comments, prayers, and overall positivity that we receive after posting an update keep us going. We are truly blessed with such a loving community of supporters and have been inspired by the kindness & generosity shown to our family. Thank you from the bottom of our hearts for seeing us through, it means the world. 🙏💛

  • New Valentine jams (Mac’s are size 2T �)
    New Valentine jams (Mac’s are size 2T 😆)
  • Thanks for visiting Colorado, cousin Catie lady!
    Thanks for visiting Colorado, cousin Catie lady!
  • What would we do without saint Lolo? 
    What would we do without saint Lolo?
  • Nora’s intensive OT- they restrict her right hand (or make it into a kitty cat paw as she says) to force her to use her left hand. She is doing amazing!
    Nora’s intensive OT- they restrict her right hand (or make it ...
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