Nori's Story - Norah West

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Nori's Story - Norah West

This page is managed by Nori's parents, Mike & Holly. At 2.5 years old, our precious Nori was diagnosed with stage 4, high risk neuroblastoma.

She has undergone 5 rounds of chemotherapy, 11 rounds of immunotherapy, 22 rounds of radiation, 2 major surgeries and is currently on the Neuroblastoma vaccine treatment. She has had countless blood and platelet transfusions, hospital inpatient stays and fevers. Over the last 18 months of treatment, Nori has been inpatient or has had clinic visits totaling over 250 days. Please have courage and sh

are, for where there is
Awareness
There is Funding
And where there is
Funding
There is a CURE! We created this page to have a place to update family and friends on Norah's journey. The decision to share her story on social media was not made easily, and even now, our family is deeply protective of our special girl. In doing so, we are entrusting a sacred piece of our heart with all of you. We appreciate your support as we navigate this unfamiliar terrain together.

05/21/2026

Prom is such a huge event at Msk - it’s so awesome that every kid can go to prom! Peep Nori’s amazing oncologist - Dr Modak! 😊🩷🎗️

05/08/2026

Hello everyone! Sorry it’s been so long since I’ve posted but no news is good news right?

Norah has been doing GREAT! At the beginning of April she celebrated her 13th birthday! I can’t express enough how thankful we are for all of Norah’s milestones. Many of them we did not expect she would reach but we thank God for each and every one. We celebrated our beautiful and brave Nori with balloons, presents, a special dinner and lots of cards and letters from friends and loved ones. 🩷

We are down to about 2 weeks left of school. Both girls - and myself - are ready for summer! This year has been very busy with the girls dance classes and other extra curriculars like scholars bowl, NJHS and drama club. It has kept us busy busy so we are ready for things to slow down. Evie will be moving on to high school! I can’t believe it! She recently tried out for color guard and made the team! I’m so excited for her - I was also on color guard in high school (same high school as Evie!) so I’m super excited to see her perform! Norah will be a 7th grader! Again, hard to believe! She’s going to be in drama again for sure but I’m also hoping she will join the tennis team! We will see what she wants to do when it gets a little closer 😊

Norah, Evie and I will be headed to nyc in June. We will be there for a week - scans, endocrinology, long term clinic, neuropsych evaluation. It will be busy! I’m already feeling anxious for scans. 😣 A couple of the days aren’t as busy as others so I am hoping those days we can go do something. Norah wants to go to the museum of natural history which will be so cool. Evie wants to go see where Alexander and Eliza Hamilton are buried. And I’m hoping we can finally use the gift card aunt Meghan got for nori at Ellen’s stardust diner! It’s the one where they sing a lot! 😊 We’ve tried 2 other times to go but the line wrapped around the building and Nori wasn’t in any shape to stand outside and wait for hours. So… we will see how it goes!

Please continue to keep nori in your prayers. All I can think of when I look at her is how healthy and wonderful she looks. I hope and pray there is nothing starting up inside and we get clear scans again ❤️

And we continue

03/17/2026

Well. We are home. I woke up yesterday morning at 3:20am- hadn’t slept well at all. I rarely do before flights. I checked my email and the southwest app for any changes - no email and no changes. Then I checked my text messages….. one from southwest saying our flight was cancelled. Great. I started looking at my weather app and it looked like the storm that was supposed to clear out of the Chicago area by morning had actually gotten worse. They were in a winter storm warning now. And in New York - the thunderstorm that was supposed to clear out in the morning was still going and more on the way. That explained the cancellation. Mike started checking for any other available flights - none on Monday. None on Tuesday. Wednesday we had flight options but all Norah’s appointments would be screwed up. Considering it took months to have an available appointment with her endocrinologist, I knew there was no way we could reschedule by a couple of days. So I decided to scrap the whole trip and see if we could move everything to June. We already have appointments in June for scans and a visit with survivor clinic. Then we went back to bed! Norah didn’t wake up until almost 9 which is unlike her - she’s an early bird! She was soooooo happy to hear we weren’t going on this trip! All day yesterday she was in the BEST mood. 😆 So we are hoping to plan some fun things here at home this week now and head to the city this summer ☺️❤️

03/12/2026

Next week this sweet girl and I head to New York City. We will be there for 4 days but no scans this time! We will be meeting with her endocrinologist, doing a hormone test and getting her yearly neuropsych testing done. It’s not a lot but it’s going to keep us kind of busy. The neuropsych test alone is 6 hours! I’m hoping that breaking It up over a couple days will make it easier for her. However - I’m hoping since she will feel well (because there’s no shots), there should be lots of time for us to go do something in the afternoon. I’m hoping at least to get out to Central Park and walk around. Unfortunately nori has been sneezing the last couple days and woke up this morning coughing 😣 I’m hoping she can get a couple days of rest and then feel better before we go! She does not want to go to new York- I can’t blame her. But we will make do and if anything we will be spending time at the RMH in the play room and see Miss Nadia ☺️ Please keep us in your prayers for a safe trip there and back 🩷

And we continue

01/16/2026

🌟🌟🌟🌟Scans are clear 🌟🌟🌟🌟

Thank you everyone for your prayers and messages and good juju and love! Mike and I are so happy and relieved! Nori and I will head to nyc in March for some appointments with long term care and endocrinology. Until then, we will enjoy our normal lives at home ❤️

Thank you again for continuing to support our family on this journey!

01/15/2026

We are home! Nori did great during her scan today. She got to pick a movie and chose The Lorax - one of her favorites. The entire scan takes about an hour so we were on the road around 12:45pm. We won’t have scan results for a day or two. This is the hardest part for me and Mike. Waiting. Please pray for peace for us while we wait. Norah is certain her scans will be clear. She told me many, many times today. We pray she is correct! ❤️

01/14/2026

Nori and I are back in KC for scans. Those 4 months went by fast! Nori has been feeling great and doing well at school. She and Evie just started up dance classes again - they’re very happy about that!

Nori and I drove up this morning. We headed to cmh to the pharmacy to pick up the meds nori has to take prior to her scan. Then we headed over to the RMH - We got there so early, our room wasn’t ready yet! So we camped out in the living room for a couple hours. I ended up falling asleep on the couch! Thank goodness I had set an alarm 😬 We had the same nurses helping us in radiology. They are amazing! They were gentle and explained everything to nori. She was worried about the injection of course. They found a good vein, numbed it up for her and got it! They’re so good at what they do. The whole time they’re talking to Norah and trying to make her feel comfortable. She mentioned that her birthday was coming up and that she will be 13! One of the nurses said his son just turned 13 and he likes to sleep! He joked that he had to pull him out of bed by his legs the other morning. Norah’s response: “well, why don’t you just wake him up with an air horn?” 😆😆😆😆 Legit question. It made all of us laugh. I don’t know where she gets these random things from sometimes but she is quite witty ☺️

After we finished at the hospital we came back to the RMH and thankfully our room was ready. We were in our room no more than 10 minutes when we got a call from the front desk that Benson was there to visit! We hurried to visit and play with him ☺️ it’s been about a year since we’ve seen him! He’s still as sweet and fun as ever ❤️

We made it an early night- we will have a long day tomorrow. Scans and then the drive home. I’m thankful we only had to be gone for one night. We are near the helicopter landing area for the hospital so we’ve been hearing them all night. It makes the room shake and the windows rattle. I doubt I can sleep through it. Every time I hear it, I always say a prayer for the little kiddo on the flight. I pray for their safety on the helicopter and their healing when they get to cmh. I have always done this and I will continue to do it ❤️

Please keep nori in your prayers for clear scans. She is very worried and I truly hate that she has that fear of her cancer returning. The other day she got into the car after school, crying, and saying “why do I have to be the one with cancer?” 😣 It breaks my heart that she’s so aware of it. I hope someday we can explain to her how many people have prayed for her for so long ❤️

The photos are nori with benson and our room at the RMH. We are on the 3rd floor for the first time and our room has skylights!

Thank you again for all your love and prayers! ❤️

And we continue

12/26/2025

Wishing everyone a peaceful and gentle holiday~

With love,
Nori and Evie

11/25/2025

🎗️10 years🎗️

10 years ago Mike and I received the worst news…. Our 2 year old had cancer. To be honest, so much of the day is a blur….. I remember taking her to our pediatrician where she got an xray. The xray still showed a mass of something near her adrenal glands so he scheduled us for a sonogram at a local hospital. 100+ Images later, we were told it was some kind of a mass they would need further testing. I was in a daze. They took us up to the Peds floor where I flat out asked the doctor if this could be a tumor. He told me yes but a scan would tell us more. I remember barely being able to stand while they tried to get an IV in Nori’s little arms. They tried everything to distract her but it didn’t work. She was so scared. She was hurting. And I couldn’t fix it. She and I both cried pretty much all day. It was late in the evening and Mike had gone home to pack some things and head to Kansas City since we had been told we would be airlifted to children’s mercy for scans. I would fly with nori. She and I were playing peek-a-boo hide and seek in the room when a doctor came in with some papers, put them down in front of me and pointed to a word on the page while asking me if I knew what that word meant. I looked down at the page.

Neuroblastoma

I had heard of it. And not good things. I told her yes it’s cancer. She said yes that’s what we think your daughter has. I remember saying kids die of cancer don’t they!?!? She said yes, but not always. I don’t remember anything else she said aside from asking me if she could pray for us. I said yes but I don’t remember hearing any of her prayer. Then I made the worst call of my life. To Mike. To tell him what the dr said. I don’t remember what I said to him. The next thing I remember was the crew from cmh coming in, loading nori up in the stretcher and turning on frozen for her to watch. They were so caring and gentle with her. And with me. As we got on the plane and got settled, one of the medics told me nori was asleep. That was a blessing since she had not slept in weeks. She had been in so much pain she didn’t even want to hug us or sit with us. Just near us. He gave me his coat since I only had a lightweight shirt on and it was November. I hadn’t planned to be gone all day - Nori’s appointment with our pediatrician was at 10:45am and I hadn’t been home since. He told me about caring bridge and how it might be a good place for me to journal about all of this. We didn’t land in KC until 1am. The flurry of activity getting to cmh was a blur. We went to a room where nori hid under the blankets and refused to come out. I don’t remember anything but talking to doctors - I don’t know what was said. When we left the hospital a few hours later, we had a surgery day scheduled to remove her tumor. They did believe she had neuroblastoma but said they would do a biopsy to make sure. Little did we know we would be back at the hospital a mere 5 days later when a tumor grew behind Nori’s eye - paralyzing it and the left side of her face. That’s how fast this cancer spreads and grows.

It’s a horror story. I wish I could forget it. But I can’t. It’s made us all who we are today. Nori has survived 10 years of living with this cancer and all of the things that come with that. An endless list of side effects and continued therapies of some form. This probably will never stop.

I don’t know why nori is still here. If you look at the prognosis and all the percentages of survival - she shouldn’t be. Against all odds - she is! I know we have God to thank for that. Earthside, she’s had many amazing doctors and nurses and therapists and loved ones and strangers all helping her and praying for her and loving her. It’s everything combined that has gotten us all to where we are today. 10 years later. I can’t put into words how it feels to have had so many people all over the world thinking and praying for nori. It’s enough to make me cry. The best I can do is just to say thank you. All of you. ❤️

I don’t know what the next 10 years will bring but I hope and pray that I’ll be sitting here, tearfully, writing about how nori has survived another 10 years…. How she’s graduating from college… or off traveling… how she’s working through her side effects from treatment and getting stronger. I hope and pray I have nothing but good things to post. ❤️

Today is also heartbreaking as we said our final “I love you” and “I’ll be seeing you” to Papa George 7 years ago. It seems hard to believe we’ve managed 7 years without him. It’s been hard and there are many tearful days but I know he’s watching over us. I know he’s proud of everyone for carrying on…. I know he’s been with us during Nori’s treatments. I know he is with all of us every day as we make our way without him. We miss you Papa and love you to heaven and back ❤️

Instead of spending the day in the hospital with tests and pokes and chemo and tears, we got to watch Nori relax at home. Play with friends. Eat snacks and laugh at whatever she was watching on her ipad. She even vacuumed the living room and helped with laundry today! You got to be YOU and enjoy life. No tears. Only fun. No hospitals. Just your cozy bed. We got to be together. We got to kiss your cheeks and hug you tight. I’m beyond thankful for that 🫶🏼

11/22/2025

I apologize for the problems with the file for Norah’s card. Please try this new one and let me know if it doesn’t work!

https://drive.google.com/file/d/0B4KF3jBHLA5KY0xKUW9qLUVmNEtYU0RkQU1LTFRRcDktWXE4/view?usp=drivesdk&resourcekey=0-CQtZAvTRVA6iSLYEOK7pMw

11/21/2025

I apologize for not posting lately! Right after we came back from Orlando, I got really sick for about 2 weeks. It’s a rough virus…. Fevers, cough…. And then I got pink eye on top of that! I’m glad I’m over it and thankful the girls remain healthy!

I can’t believe we are coming up on 10 years since Norah was diagnosed. It’s a day that I wish was just a regular day… but It’s very, very complicated with so many emotions. I feel sad about Norah’s diagnosis and what she’s had to endure. I’m mad that her childhood was taken from her. I’m heartbroken about finding out more of the long term issues we will be dealing with. Some are not so big of a deal - like being short. Others are huge - like not being able to have children. I feel anxious almost all the time. I feel frustrated at the lack of research for our kids. But I also feel glad that she is still here with us. I am so thankful for that. I’m so happy at how well she’s doing with school and with her friendships. I’m thankful for all the friends and experiences we’ve had over the years. For every milestone Norah reaches, I am reminded of all our little friends who didn’t make it to that point and my heart breaks over and over again. Survivors guilt is something I deal with. We also miss Papa George so very much. His absence is felt all the time. He is without pain and in heaven, but I’m selfish and I wish he was here with us.

It’s a day where we all just feel emotionally spent. Can we skip over November 24th some year?

——-

November 24th is a very emotional day for our family - on November 24, 2015 Norah was diagnosed with stage 4 Neuroblastoma at the age of 2.5. Then, on November 24, 2018- Nori’s papa George walked into the arms of Jesus after a tough battle with lung cancer. To have both of these devastating events happen on the same day means that thanksgiving is always rough for our family. We grieve so much. We grieve Papa’s absence and all he’s missed in 7 years. We grieve the journey Norah has had - starting 10 years ago. We grieve for our lives that didn’t turn out as we planned or expected. We grieve for our loss and our pain. So, every year since Nori’s diagnosis, we do our best to overcome what was the darkest day in our lives. We try to bring a little bit of joy to the day by doing acts of kindness for others. Papa George was one of the kindest people I’ve ever known so we also honor him by doing these acts of kindness. Papa did them every day whether it was holding a door open for someone or giving me a big hug and telling me “thank you for being such a good mother”. ❤️The little acts of kindness meant so much.

We invite you to participate in Norah and Papa’s day of kindness with us this year! In this post I’m including a link to a card that you can print at home. On the card it explains what the day means to us and why someone would be receiving the card. When you do an act of kindness on (or around) November 24th, please give out this card. We want to share the love and hope and a little bit of sunshine ☀️

Your act of kindness does not have to be something big. It can be whatever you want! Maybe your neighbor needs help raking leaves. Offer to help and then hand them the card ☺️ Maybe you want to tip your barista or waitress a little extra - please give them a card. ☺️

Some other ideas which have been done in years past:
*Take snacks to your nearest police station or fire department
*Check out your local Ronald McDonald house wish list and take a few items to them
*Take some cookies for your teacher
*Pay for the coffee for the person in line behind you
*Put a gift card inside a box of diapers
*Find your favorite book at the library and put an encouraging note and the card inside

This year we suggest making a $10 donation in Norah’s name to any of these organizations listed below. They have directly impacted Nori in one way or another over the last 10 years:

*Donate in Norah’s name to The National Children's Cancer Society (NCCS) - NCCS has helped us with flights to and from NYC for the last 7 years!

*Donate to Give Kids the World in Orlando in Norah’s name - this is where we stayed for our Make A Wish trip!
https://www.gktw.org/help/give.php

*Band of Parents - this organization helps neuroblastoma kids at MSKCC, they have funded many of the treatments Nori has had over the years
https://www.bandofparents.org

*Memorial Sloan Kettering Cancer Center - https://giving.mskcc.org

*Candlelighters NYC - they help turn crappy Into happy! We’ve gotten to do a lot of fun stuff with Candlelighters. They are amazing!
https://candlelightersnyc.org/CNYC/

*If you are local to us, a charity that helps rescue and house kitties can always use help!
Check out “save the kitties” on facebook

The bottom line is that no matter big or small, your act of kindness is meaningful and welcomed! We would love to hear what you have done - if you would be willing to share, please post on our page. Or you can always message us and we can share for you - anonymously if you prefer. Dont forget to use our hashtags so we can share the moment with you ☺️❤️

Thank you all so much! ❤️❤️

https://drive.google.com/file/d/0B4KF3jBHLA5KY0xKUW9qLUVmNEtYU0RkQU1LTFRRcDktWXE4/view?fbclid=IwAR3PreUMyCQ1eGOovihyxCEbMoaMZaBboZcfdFE3XziF5O1YC2Bt4qczHEs_aem_AWSpQ2UV4kp7DT_iBvPyg5gyW8Pzm7l1N7dd-bkKnMkWwmPaEQuxNOF98XSA-KUvoio&resourcekey=0-CQtZAvTRVA6iSLYEOK7pMwin t

Address

Derby, KS

Website

http://gofundme.com/norahwest

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