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.

06/16/2026

Welp, getting older stinks and with that being said we rescheduled our NYC trip to July. I’ve had some health issues the last couple of weeks and even though everything is ok, I was not in the best shape to be flying and spending a week away from home. You can imagine how happy Norah was for the news! 😆🎉 So we get a little more time at home… a little more fun in the sun 😊 We will regroup for July! Thank you to everyone who has checked in with me these past couple of days 🩷

06/12/2026

The lazy days of summer are upon us and we are ready! The last couple months of school were jam packed so we are grateful for so many days where we don’t have to set an alarm! 😊 We’ve done a lot of swimming so far and not much of anything else.

This Monday we head to New York. Evie is coming with us - she has not been with us for many years. We are hoping to have some time to go do some touristy things and we’ve narrowed down the options. It helps to have a tentative plan for now. I hope we are able to get out a little - seeing that New York isn’t always scary and painful and only hospital visits would be good for Norah! One of the things the girls want to do is go to Times Square to the m&m store and the Hershey store. We don’t love chocolate in this family or anything! 😆😆

Our entire trip is full of so many appointments - we have at least one appointment every day Tuesday thru Friday. We will be visiting with endocrinology, long term care, our regular team, having scans, neuropsych testing and hormone testing. It’s a lot. But at least we will have some answers for many things and we will have a starting point as to what her body is doing now post-treatment. I’m very thankful for the long term care team at Msk. They have so much experience with the concerns and differences in our kids vs kids who didn’t go through chemo and radiation as toddlers.

Norah is not looking forward to the trip. We’ve already have had several talks about the testing that will be done and what it means as well as the usual fear of getting the IV. I feel so sad for her that she struggles with the anxiety of traveling weeks before we even go. I don’t know how to help her with her fear… I, too, had a fear of needles as a child but I eventually grew out of it. I don’t think it’s that easy with Norah given all the years of treatment and the trauma it has caused her. She gets an IV only 4-5 times a year now and it only stays in for a day or 2 at the most…. But it’s the needle that worries her so much.

Please continue to keep her in your thoughts and prayers. We are praying for continued clear scans and an easy IV placement. Also for an easy travel day for the 3 of us. Thank you all for your love and comfort! 🩷

And we continue

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

Address

Derby, KS

Website

http://gofundme.com/norahwest

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