10/13/2025
Ok I finally have time to sit down and post about our whirlwind trip. Its a long one so settle In š
Wednesday Nori and I were up early to fly out to NYC. We had no issues with flights thankfully and arrived in NYC around 1pm. By 3pm we were settled at the RMH but had to turn right around and go up to MSK to pick up some medication for Norah. There's a special med she takes prior to receiving the injection for her mibg scan - it protects her thyroid from the injection so it's VERY important to have this med! The weather in NYC was really nice and it was a quick walk to the hospital. We always have to wait about 10 minutes for them to fill the rx so we headed over to the gift shop. I haven't been in the gift shop since 2016 - basically the first time we went to msk! But, I wanted to check on something there. Another nb mom I met many years ago started a business called My Big Fat Cookie and she sells the cookies in the gift shop. I wanted to support her family and try the cookies and we found them! We bought 2 - one for our family and one for Chris Pratt. š Nori also got a cute little teddy bear wearing a tshirt that says "MSK Kids" which I really love- the marketing for the kids Is so adorable š We got the med, picked up lunch on the way back and spent the afternoon relaxing and getting settled.
Thursday morning was an early day again. We had to be to the hospital by 7:45am... but we needed to be back to the rmh by 10am for our ceremony with Chris Pratt! We got there on time and spent the next hour sitting in the waiting room. I started to panic a little bit because I knew we had several things to do (get Norah's IV, labs and meet with the team) before we could leave and we hadn't seen anyone in over an hour. Thankfully, one of the ladies at the front desk is someone we know from our early days at msk so I explained the situation to her and she immediately got on the phone to see where we were in the line-up. About 10 minutes later we were chatting with someone from the team and then off to get her IV. This part was hard. Poor Nori's veins are so tiny, they had a hard time finding one. The nurse thought she had a good one in her hand - where Nori prefers her IV's - but she couldn't find it once the needle went in. I was absolutely shocked at how calm Nori was during this part. The nurse was pushing the needle in and out and all around to try and find that vein and Nori wasn't even crying! I would have been crying! Nori has such a high tolerance for pain and a great understanding of what needs to be done in certain situations. She calmly let the nurse keep trying until the nurse said she needed to try a new spot. They ended up going in her arm - but they got the vein right away which Nori was really happy about! I was so proud of her for toughing it out and listening to the nurses. She took the labs and we were off! We got back to the RMH with plenty of time to change and freshen up before heading down to the lobby. Part of the small ceremony for Chris Pratt was in the conference room, so we headed in there. At one point, I couldn't find my phone so I went out to the hall to look for it in the stroller and turned around and boom! Chris Pratt was right there! LOL He scared me! Before you ask, yes I knew he was going to be at the house. I got an email a couple of days before we left asking if we could be part of this ceremony and if I could give a speech. š
The RMH had a really nice breakfast buffet for him and his group but first they did a toast to him. It was at that point that I found out that Chris had been coming to the RMH to visit for 10 years! Several people spoke and then Chris spoke for a few minutes. He talked about how the RMH is doing God's work and spending time with the kids here makes him feel really good. Miss Nadia had a small gift for Chris's publicist, Allison, who has been incredibly helpful with all of his visits to the house. She makes sure he has time in his schedule to visit the House In his speech, Chris also said that in the beginning when he just hired Allison, she asked him if he wanted to be the type of celebrity who did commercials and got all the free stuff or did he want to use his celebrity status for the better. He chose the latter and I think it has really served him well. It's helped him stay humble, kind and happy! It's obvious that he is happy and secure with his life and I think everybody should feel that way. While everyone dug into the food, we watched a video that Meagan made - Meagan is also someone who has been very hands-on with getting celebrities connected with kids at the RMH. She organizes these amazing visits for the kiddos and pours her heart and soul into it! The video was short but fun and brought me to tears too... it was a lot of old pics and videos of visits Chris had made to the house over the years. There were pics of Mason (Mason's Miracle) and Beckham (Beckham's Battle) and Preston (Preston Christiansen) ... tiny Nori and little Evie.... lots of old memories from years ago. After the video, the group headed upstairs for the room dedication. I stayed downstairs but Norah went with Chris and the rest of the group to check out the room... it was like she was hanging out with a group of friends not a huge celebrity! LOL šAfter about 15 minutes the group came back downstairs to the conference room where I was asked to give my speech. This was something that I had been asked to do by Miss Nadia - and even though I don't like being the center of attention, I knew this would be my opportunity to say things that I needed to say. I had written my speech a couple of days prior and wrote it while I was making dinner one evening. It was easy to write because when you write from your heart, the words flow. I was really, really nervous. I was shaking! I stood up and said that I had not been able to get through the speech without crying, so I apologize for my tears. And then I began.... "When Norah was diagnosed with neuroblastoma in 2015, I thought I would never laugh again. The world was dark. Haunted. Despair and sadness reigned. I couldn't think of anything that would make me laugh or smile again. Boy was I wrong. As shown to me over and over by your fantastic acting, it is possible to laugh again. To cry from laughing so hard instead of crying from sadness and fear. We laughed and had a few well-deserved tears through Avengers and Onward. Giggled with Super Mario Brothers. Roared through the Jurassic Park movies. And of course, enjoyed the classic humor of Andy Dwyer through parks and rec reruns."
That was just part of the speech I gave. I was doing my best to look around the room during my speech and make eye contact with people. When I said the part about Andy Dwyer, I looked at Chris and saw that he was chuckling. I can't imagine that he will ever forget the role that gave him his first big break!
More of my speech:
"We remember giving you bracelets with our kiddos names on them. We remember you wearing those bracelets on the red carpet. We remember you showing off your stack of bracelets on your Instagram while saying each of our children's names and how happy you were to meet them. We remember the *time* you gave to us. Time is a cherished commodity for families fighting pediatric cancer. We thrive on the memories we make and the quality of life we give our kids. The fact that you have been such an invested part in making memories and giving our kiddos a great day is beyond anything I would ever expect of a fellow human being. You're definitely one of the good ones.
In closing, I want to borrow some words of yours from your 2018 MTV Generation Award speech- 'God is real, loves you and wants the best for you.' We thank God for you, Chris."
I was still crying even at the end - when I finished, I looked across the room to see Chris coming towards me for a hug. He gave me the best and biggest teddy bear hug and I needed that. He kept telling me during the hug how amazing my speech was and how much he loved it. When the hug was done, I saw that he had tears and was wiping them away. Y'all.... he cried during my speech! š„¹It made me feel better that I wasn't the only one crying! As I looked around the room, I saw a few others wiping their eyes as well. I told Chris that while I was writing my speech, I made Norah listen to the part where he says "Don't be a turd"... and I had told her "Chris Pratt says Don't be a turd!" and we both laughed... then Chris turns to Norah and said "Yea, Norah - don't be a turd!" LOL š That will forever live in my memory! Meagan gave a very heartfelt speech next and told me later that I was a tough act to follow. We took a few photos with Chris... he kissed her cheek during one of the photos and she was soooo surprised! I told her later that everyone would think it was so cool that her first kiss was from Chris Pratt!!! It was the cutest moment ever! When we took more pics, Norah showed him her "pocket Pratt" - he said he remembered that! He told her that pocket Pratt would always be there to help her out whenever she needs him. All she had to do was hold the doll and say "Owen - help me out!". She really loved that and talked about it quite a bit in the days following. Norah just really thought it was so cool that he was there for her anytime. We gave him another bracelet and while he was putting it on, Norah asked him what he did with the other bracelets she gave him. LOL He told her they were back at his home in his closet! We also gave him a goodie bag with a Team Nori sticker, a crochet ghost Grammy made and a My Big Fat Cookie. š He gave Norah lots and lots and lots of hugs and supportive words. During one of the last hugs he gave her he told her that it was so nice to see her again and he would be praying for her. He just amazes me with how "normal" he is and how comforting. He gave me another big hug and said that he was very happy we could be here at the RMH at the same time. I said I was too - so crazy how it just worked out that way. He said it was amazing that it worked out and that there are no coincidences. š Before we left, I got to speak with a couple people who were there for the ceremony as well. I wish I knew who they were because they remembered us from back in Norah's Snow White days. One of them said how lovely my speech was and how she was so happy to see Norah looking so well and that she remembered her from being so tiny with such short hair and to see her like this just made her heart so happy. It's pretty amazing to me that people remember Norah... just this one child out of so many...
After being on Cloud 9, we were forced back into reality because we had to go back to the hospital. We had a full day of appointments. We got back to the hospital just after 11am and then waited about an hour before we got called back for her shot. This was the part that was really worrying Norah for weeks prior to our visit. Thankfully the nurse was ready for us and was fast! It took about 3 minutes for the whole thing... sadly the pain lasts a lot longer. We headed back out to the waiting area and waited another hour before being called back for our appointment with the endocrinologist. It was a good visit with him - last time we saw him was a year prior. We spoke about options regarding hormone therapy. Norah has grown 5cm since last year which actually puts her in the average range!! However, if we want her to grow more, we would have to find the perfect time post-treatment and before her growth plates start closing. So, we decided that if Norah's scans were clear, we would scan at Children's Mercy in 3 months and do this blood test during the same visit. This is always a hard conversation because introducing hormone therapy CAN make her grow but it stimulates ALL cells.... including any that might be mutating like one single cancer cell. So, Mike and I will have a lot to talk about in the next year.
After we were done with that appointment, we headed down for Norah's mibg injection. She was in quite a lot of pain from the shot and we were both tired and hungry and just wanted to get out of there. Thankfully we didn't have to wait very long before we were taken back. The injection took about 10 minutes and we were outta there!!! We went back to the RMH to finally relax and have some food! We hadn't eaten all day! We facetimed with Daddy and Evie and tried to get some sleep.
Friday morning was another early morning for us. Norah woke up with a headache but no fever. She said she had slept pretty well which I was thankful for. We headed up to the hospital for her mibg scan... and we sat in the waiting room for about 40 minutes before being called back. Right as I got up to leave, I saw a familiar face. Samantha and Hazel. Sweet family! I hadn't seen Samantha in about 5-6 years - not since she was at the RMH with her sweet boy, Elijah. It was good to see her sweet baby girl and to give her a hug. By the time we got back to the room and got settled in the machine, Norah was an emotional mess. She was uncomfortable and crying and kept telling me she wanted to go home. I did too. I kept telling her all we had to do was this scan and then we could go pack up and go home! Nothing I said mattered because she was just a mess. I was pretty sure she had spiked a fever and she kept saying her head hurt. The vaccine causes a major immune response so all the aches and pains and fever and all that is not uncommon at all. Norah made it through the first 50 minutes of the scan and then during the break she said she needed to throw up. She threw up a bunch. š But immediately after that, she looked and felt a lot better. She got through the next section of the scan which was about 45 minutes a lot better but she was still agitated. 30 minutes later the scans were done and we headed up to the kids floor to get her IV out. While we were waiting, Norah started feeling nauseous again and her headache came back. Dr Kushner was walking by and we chatted with him for a few minutes. I told him how she wasn't feeling well - he wasn't phased because it's all normal! They took her vitals - everything was fine and her temp was ok. I was surprised. The nurse took her IV out and we headed back to the RMH. I was having some major ptsd at this point because the last time Norah threw up after having the vaccine was a relapse. I kept reliving that day over and over from 2017 - when they told me that Norah had relapsed the first time. It made for a very stressful afternoon in so many ways. It was about noon when we got back to the RMH. Norah asked for some food which surprised me - but she was still uncomfortable. I wanted her to have some tylenol first and then some food so I gave her the last of the Tylenol I had and she immediately threw it up. š After about 30 minutes of resting, she asked for food again so I gave her some. She ate quite a bit more than I expected and felt better. I packed up the room and we checked out around 2pm and headed to the airport.
The kiosk at Southwest wouldn't let me check in because it was more than 3 hours until boarding. So, I asked the counter attendant about possibly switching to an earlier flight. I had noticed our original flight was delayed quite a bit and I was worried about making our connection. The counter attendants were VERY helpful and got us on the flight which was boarding in 30 minutes. We got through TSA really quick, got to our gate quick and even had a chance to stop and get some water. Flying makes both Nori and I really dehydrated so we try to have as much water as we can. Before I knew it, it was time to board! At this point, we still didn't have scan results but Mike was checking regularly. I had signed Norah up for preboarding when I booked our flight, knowing that coming home would be rough for her. We got onboard and sat in the second row next to a very pleasant lady. It was absolutely freezing on the flight. Norah had chills which I assumed again was from her temperature going up. I was cold, but I didn't have chills like Nori so I took off my hoodie and put it over her to try and warm her up. During the flight, Norah started feeling nauseous again so I pulled out a bag. The lady next to us was very concerned and asked if she could help at all. I said thank you but no - she would be ok. She asked me if it was her first time flying. I explained that she's a cancer survivor and the treatment she just had makes her feel like she has the flu. Her face changed from concerned to lovingly worried. She asked our names and she said her name is also Holly š I told her that Nori was treated at msk and she said she lives in New York City and teaches 1st grade. Then asked if she could pray for Norah and I said of course! I don't think Holly will ever read this but thank you for your concern and for your prayers. ā¤ļøAgain - there's angels around every corner!
We got to St Louis before our original flight even left NYC! We had time to eat and relax a bit. We were both absolutely exhausted! Mike texted me just after we landed that Norah's scans showed up in the portal and she's šššSTILL CLEAR!!!šššI cried a little bit... just relieved and happy for Nori. Relieved that life can go on normally for a few more months. Happy that the last vaccine was, in fact, the last vaccine.
Our flight got in really late Friday night - we didn't get home and in bed until almost 1am. It sure is good to be home though - don't ever take sleeping in your own bed for granted!
Next week we are taking a much-needed family vacation to Walt Disney World! We haven't been talking about it much just because we were unsure if we would be going since it was all dependent upon Norah's scan results. But, now that we know her scans are clear, we can joyfully say that we are going to the happiest place on earth! And we will celebrate Norah being cancer free and off treatment!
Thank you to everyone who kept Norah in your hearts and prayers and sent love and light - it helped us get through these stressful days! ā¤ļø
And we continue
