By the grace of God, an incredible Neuro-oncologist (+medical team), unwavering support from my family, and the community of support we have accumulated near and far, Nora Jean Dane has completed her front line treatment and we officially had clear post-treatment scans on Friday!!! It's hard to find the words to match our feelings, but we are on cloud nine!! Our feelings of gratitude and pure joy have been growing by the day as we watch our miracle girl run, swim, laugh, and love life. What we have seen Nora accomplish since treatment ended at the beginning of July surpasses our greatest hopes and dreams we've had for her since starting this journey. She is CRUSHING it- all of it. It is not lost on us that so so SO many people had a hand in getting us to this finish line and we will live the rest of our lives trying to pay it forward to others.

Since it has been a while since I've officially updated everyone on here, I will pick back up where I left off in mid-June. Feel free to skip to the end if you want to get to the happy news and what’s to come! I feel the need to document the end of her treatment so one day Nora can look back at what she’s accomplished and to provide an honest account for anyone who finds themselves on a similar cancer journey. So here is a recap of her final month of treatment:

We were able to travel to Indiana for the 4th of July after a scary encounter with what presented as "treatment induced acute lymphoblastic leukemia."  Two days before we were scheduled to fly home, I got the phone call from our oncologist telling me she was very concerned with Nora's recent lab results because her white blood cells were through the roof and showed "blasts" which would indicate leukemia. It was such a gut punch and feeling of deja vu because last year when Nora was diagnosed, we were getting ready to fly home to Indiana two days later for the 4th. Our oncologist got us right back into the hospital for more tests and let us know that there was a chance this was a reaction to her neulasta shot she received after each round of chemo (it stimulates her bone marrow to reproduce) or it could be a result of her chemos (we know that three if her chemo drugs put her at a higher risk for leukemia). It seemed like the docs felt it was 50/50- neulasta side effect or treatment induced ALL. Our medical team was so incredibly great to us and completely understood the enormity of the situation and wanted nothing more than to get us on a plane to Indiana but obviously needed to take all necessary precautions. We were able to get some more testing done within 24 hours that gave the doctors a bit of relief but we weren't out of the woods yet. They allowed us to go to Indiana but we needed to get blood work every 3rd day to ensure Nora was still moving in the right direction. As soon as Nora was in Indiana at Lolo's house, Alex and I felt an immediate sense of relief. Our girl was living her very best life surrounded by her cousins, family, & friends. Nora was so full of joy & energy; she was ready to take on the world- there was no way she had leukemia! After our final blood draw in Indiana, our medical team felt comfortable saying "we were officially out of the woods for leukemia," confirming what Alex and I were already feeling. It was definitely a reality check for how life moving forward will be for us, but more than anything it brought us back to living and loving life one day, one moment at a time.  
Our time in Indiana was nothing short of magical- good for the heart and soul. We called each day there "the best day of Nora's life" because she just seemed to gain more and more zest for living (which was a combination of her rebounding from the previous round of chemo and the magic that is Lolo's house). We celebrated my dad's 70th birthday, got to thank some of our Lafayette supporters in person, and just soaked up midwest summer fun. As our time came to a close there, we were left feeling overwhelmed- we just had the best week of our lives and now we were returning to Colorado for our final week of hell, which in reality isn't just a week- it's 3 weeks; a week of being hooked up to chemo, a week of feeling miserable, followed by a week of recovery. We got to the hospital for our final chemo week (7/8/19) and started with labs as usual to see if Nora's counts recovered enough to reach the threshold needed to start her next round of chemo. The previous 2 rounds, Nora was just below the threshold, but they felt fine pushing her forward because she was so close to the cutoff and because they expected her body to have a harder time recovering as the amount of chemo her body received accumulated. The head neuro-onc nurse told me that she had never seen another patient handle this protocol as well as Nora did, without any treatment delays, so few blood transfusions, and minimal hospital admissions. That made my mama heart burst with pride- because I know how tough my girl is, but it always feels good when someone from the medical field reiterates how truly tough her little body has been. That being said, when we got Nora's labs back for her final round of chemo, she wasn't even close to the threshold. They gave us the option to postpone her final round of chemo by a week which felt like a cruel joke- we never had to postpone chemo! And now we were so close to being finished- we already had her bell ringing party planned, our main oncologist was leaving at the end of the week, it just seemed crazy to me that the light at the end of the tunnel (that was already slightly dimmed from the leukemia scare!) was being pushed further away. The two neuro-onc docs that were in clinic  that day looked at Alex and I and basically said that Nora has received a heck of a lot of chemo with close to zero dose reductions and they felt comfortable just doing her topotecan into her brain and leaving out the doxorubicin + cyclophosphamide (the 2 nasty, IV chemos that she gets over six hours/three days in a row). I waited for a text confirmation from Dr. Hoffman to make the final decision, and when she said she was comfortable with that decision, it was decided right then and there that Nora was done with chemo. Kind of anti-climactic, very much surreal, but overall the best surprise ending we could have hoped for. Not only were we finished, but Nora wouldn't even have to suffer through the effects of her heavy hitting chemos and low counts. She basically had zero effects from the topotecan alone. 🙏💪

 Nora rang the bell on Friday, 7/12/19, which fittingly was Dr. Hoffman's last day at Children's Hospital Colorado. There is a Winnie the Pooh quote that sums up our feelings about Dr. Hoffman- “How lucky I am to have something that makes saying goodbye so hard.” She was our Devine intervention, Nora’s earthside guardian angel, and she saw us through the most important part of this journey and now she will go on and change other lives for the better. But holy cow, saying goodbye to her wasn’t easy!
Since we were officially footloose and fancy free upon ending treatment, we decided to plan a last minute trip to Indiana again (I guess I summer in Indiana now?) so Nora could continue living her best summer life. This time we got to see the tiny Thiels (my sister + her family) who we missed during our first week home, as well as my bestie from college and her little girl who is exactly the same age as Nora. It was another heart & soul healing week for all of us. 💗💛💗
Up next: Nora will be getting her g-tube and port out soon! We have delayed it a bit so that Nora can enjoy her last few weeks of summer swimming! There is a 2 week healing time that excludes swimming. Treatment is officially over. There is a trial that we could have participated in, but there is no research showing its direct effect on ETMR  so we feel comfortable and happy saying we are done. 🙌 We will be getting scans every 3 months for at least a year (then they will move to 4 months, 6 months, etc.). Scans will continue for 5 years. Nora will continue with PT/OT and she will start back up at Miss Jennifer's full-time with Mac man next week. She is SO excited. I will be going back to work 1/2 time, continuing in my role as a literacy internventionist for upper elementary students at Swigert.

We have a family camp weekend planned at the YMCA of the Rockies in Estes Park over Labor Day weekend with all of Nora’s cousins. They have their own version of make-a-wish called their grace program and have gifted us a cabin for the weekend so we decided to make it a celebration of life with all of her cousins!

Our real Make-A-Wish trip to Disney world is scheduled for the last week of September and we can’t wait for the memories that will be made at the most magical place on earth (Lolo’s house will be pretty hard to beat, but we’re pretty sure our princess-loving girl is going to lose her mind at Disney 🤯😆). 

I’ve felt less and less compelled to update caring bridge as I’ve found more and more inner peace with where we are. I’m thankful for this platform & relied heavily on my writing as a way to cope and process everything we were experiencing. I gained so much strength from everyone’s encouraging comments and know one day Nora will be able to read through her journey and gain her own strength from it. That being said, I don’t plan on updating this site very frequently as we move forward with living. Facebook & Instagram are about all I can handle!

Never in a million years would I have believed you if you told me a year ago that my family would be so full of joy and participating in all the things that childhood summers are supposed to be made of- but here we are, living beyond what I could even dream of. It truly feels like we pushed pause last June (2018), traveled through hell a few times, gained a whole lot of perspective, crossed paths with some incredible humans, learned what life is really about, and now we get to push play and start living again. Whoa. What a ride it's been. Thank you, thank you, thank you- the prayers, positive vibes, comments, letters, gifts, donations, and meals gave us the strength to get here & we are forever endebtted to you all. ❤️

So much love,

The Danes