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.


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


#norajeanthefightingmachine

Newest Update

Journal entry by Caroline Andrew Dane

We’ve been radio silent because we really don’t have much to report! The past 3-4 weeks have definitely been the easiest for Nora since diagnosis. Hallelujah! Despite pumping 8 different chemos into her little body, & receiving 29 sessions of proton radiation, she’s not just surviving, she’s somehow thriving! Her appetite is coming back, (she’s gained almost 4 pounds since October!), she’s walking, climbing on furniture, talking nonstop, full of energy and HAPPY! 🤗 Nora Jean truly is a cancer fighting machine! We are totally blown away by how amazing she’s doing. Our prayers are definitely being answered. 🙏

Since the last post, Nora had her follow-up, sedated hearing test. We are happy to report that her hearing has remained stable from her previous test done in Cincinnati (just high pitch loss in both ears, left ear is a bit worse, but no damage to the middle-low registers which is what’s important for speech and learning). She is not a candidate for hearing aids at this time. This last hearing test was important because she is now completely finished with cisplatin, the chemo that damages hearing, so we are hopeful that no more hearing loss will occur.  
Round 7 of chemo fell during the week of thanksgiving. It consisted of intrathecal topotecan (directly into her brain), actinomyacin D into her chest port & a new oral chemo (temozolomide) that I gave her at home. She tolerated this combination so well that if it weren’t for her bald little head, you’d never even know she was sick. She had labs drawn yesterday and her counts are already recovering. She hasn’t needed any blood products (transfusions) since we’ve been back in Denver and her color has been looking great. 💛 
Nora refers to her days as either a “play day” or “hospital day” and boy are we glad that “play days” are starting to outnumber “hospital days!” Next week is the very first week since diagnosis (June 19th) that we don’t have a single hospital visit scheduled. An entire week where my girl gets to be busy doing regular 2.5 year old stuff! Except nothing Nora does seems “regular” anymore. The things we see her accomplishing on the daily can best be described as miraculous. She’s really doing it. 💪

Our next round of chemo (round 8) starts on December 17th. It is exactly like round 7 minus the intrathecal topotecan. This will be the lightest round of chemo throughout her protocol and just happens to coincide with Christmas- best gift ever! We have been given the okay from our medical team to travel to Indiana for 2 weeks so Nora (& sweet Mac man) will get to spend Christmas with all 12 cousins! Knowing that Nora will be feeling well and able to enjoy Christmas makes my heart so SO happy... a happiness so great that I know it only comes after devestating heartbreak. Cancer has caused more heartache in my life than I knew was humanly possible but it’s also given me the ability to feel  love and happiness so much deeper than before. Cancer has shown me that God and hope are powerful and abundant and will continue to see us through this journey. 

We couldn’t do this alone and still feel so lucky for our army of supporters. We read every single note, message, & comment and feel the positive energy surrounding our family- thank you!! ❤️💛

Merry Christmas & happy holidays from the Danes! 
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