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

So sorry for the radio silence... we have been busy livin' the summer life (which is crazy busy with a 3 year old & 15 month old)! Now that school is out, Mac is at home full-time & it's been so great to watch them be siblings and play with each other. I would say that the last 2 weeks have felt closer to a real normal than I ever anticipated we would get to while still in treatment. That gives me so much hope for our future.

Most important news to share is that Nora had clear scans at the end of May!! She also had another echo to check on her heart, which still looks healthy and normal. She handled her most recent round of chemo like an absolute rockstar and didn't need any blood transfusions. We start her second to last round of chemo on Monday (6/17). Our final round of chemo will be July 8-11. This is a week later than initially planned because Nora's last MRI was scheduled at the same time as her chemo week and by the time scheduling realized the overlap, it was impossible to find a new MRI time, so we just pushed everything by a week which ended up being a good thing. The extra week between chemo rounds gave Nora's little body a bit more time to recover which I think is the reason she didn't need any blood transfusions. It also allows us to travel home to Indiana to celebrate the 4th of July (which happens to be my dad's 70th birthday!!). Nora's end of treatment evaluation scan is scheduled for August 2nd.

Nora has been going to physical therapy to strengthen her left leg and the therapist is so impressed with how incredible Nora is doing. She is regaining her balance and ability to climb. She can run (more like a speed walk, but to her it's a run!) and doesn't wear her leg brace anymore. Seriously, she is a miracle child.

On the day we got the good news about our scan we also found out our main oncologist, who we just love and trust whole-heartedly, is moving to Arizona in July. It was emotional news for all of us to receive which just shows me how truly blessed we were to have Dr. Hoffman guide us through this year. We love her! She got us through what will hopefully be Nora's only year of treatment- the year that mattered the most. She will always remain part of our cancer journey and we know we can call on her for any future decisions that need to be made. That being said, we love the entire neuro-oncology team at Children's and continue to be in great hands. 

This past week, we were able to share our story for our favorite non-profit, There With Care. They are making a video to show at their big red carpet fundraising event in Boulder & in Denver. There With Care helps families with children facing critical illnesses. They deliver groceries, cleaning supplies, laundry detergent, diapers, paper products, and snack bags to us every other week. They send us gas cards to help with transportation costs. They also provide Nora with little surprises she can take with her for long clinic days- books, art supplies. toys, etc. They were who gave us the beautiful unicorn cake & birthday decorations for Nora's birthday. Basically, There With Care has allowed us to be a family and truly enjoy the everyday moments that bring so much joy to our lives right now. All of this has also helped alleviate some of the financial burden that comes with covering medical bills while only having one income. We are so incredibly grateful that they have been part of our journey. If you are in the Denver/Boulder area (or the Bay Area) please consider donating to their cause. Talk about angels among us- everyone we have met from this organization has left an imprint on our hearts. By sharing our story, we hope that we are helping future families that need the support from There With Care.

The light at the end of the tunnel is shining ever so brightly and we couldn't have gotten here on our own. If you are reading this, thank you from the bottom of our hearts and souls- the prayers, good vibes & energy, likes, comments, notes of encouragement, donations, meals, (ALL THE THINGS!!), have left us overwhelmed with gratitude. It takes a village, and ours has been the absolute best. 
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