Nora | CaringBridge

Nora’s Story
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.


Newest Update

Journal entry by Caroline Andrew Dane

It’s with mixed emotions that we embark on these next 6 weeks, the final stretch of Nora’s induction chemo. We are so glad to be back home at our house and to be reunited with our Denver friends. But week 13 chemo started immediately upon our return and she gets her heavy hitting chemos that cause her horrible mucocitis. We are using some of the oral care tips we learned in Cincinnati, along with popsicles and prayers to try and keep these horrible mouth sores under control. 🙏💪 She also has her g-tube in place now so even if things get as bad as prior rounds where she couldn’t swallow ANYTHING for 7+ days, she will still be getting proper nutrition the entire time. So she will at least have a little more strength to fight through her low numbers.

Our final two weeks in Cincinnati and Indiana were so wonderful for our family. We were able to spend our last 2 weekends at my parents’ house in Lafayette and Nora thrived being around her cousins and staying at Lolo’s house. We even managed to get Mac man baptized last weekend. Father Patrick from St. Tom’s (my childhood church) did a perfect baptism ceremony right in my parents’ living room. I’m not an incredibly religious person- I pray and go to church on religious holidays (sorry, mom!)- but there was definitely a feeling bigger than I can describe that filled the house that night- it was the happiest we’ve seen Nora since treatment started in July. It was good for our hearts and souls. ❤️

Pediatric cancer treatment is so brutal. It seems like right when Nora starts to get back to her old self- confident, silly, playful- she gets knocked right back down. It’s so hard for her to understand that she’s still “sick”. When we got close to the hospital here in Colorado yesterday she looked at it and then looked at me and said, “no, not me in there! I all better now... no doctors for me!” 💔 But she handled it amazingly well and was chatty and happy throughout her 8 hour day of chemo. It was good to see the familiar faces of our medical team here and they were all excited to see Nora.

We have another 8 hour chemo day today (Wednesday) and then Thursday and Friday are shorter and we will have completed week 13. We don’t have any chemo again until week 16! 🙌 this is the first time we have had a week off from chemo since we started. That feels like progress!

We are forever thankful for our time spent in the Midwest with our amazing friends and family. There aren’t enough words to truly express our gratitude.❤️💙💖💛 Our Denver crew was equally amazing in taking care of our house and cats and had our house decorated for Halloween and stocked full of goodies for our return. Nora was so excited and I was reminded of how blessed we are to have so many truly good people surrounding us to help us along this journey. ❤️🙏
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