07/15/2026
Yesterday was an incredibly long day. It started at 6am when we had to wake up and start getting ready to go to Msk. Nori had a 7:15am appt to begin her endocrinology testing. The testing was going to be about 4 hours long consisting of a pill that nori took and then blood was taken every 30 minutes for 1 hour. Then an IV med was given and again blood was taken every 30 min. These meds and the bloodwork are basically showing the doctors if Norah has a hormonal deficiency. This will help them figure out what medication would help nori best if we decide to give her growth hormones.
We got all checked in - nori was super worried at this point because she knew she was getting her IV very soon. We got called back to one of the bed areas which confused us because we assumed we would be just hanging out in the playroom while they gave her the meds and took her blood. One of the nurses, Kat (who is amazing and has been here since we started coming!) explained that she had a bed area because the meds can cause drowsiness and low blood pressure. So it would be good for her to have a place to rest and not have to try and find a place to sit in the waiting area… which makes sense. By the end of the testing we were very grateful to have the room! I realized that we were in the same bed as the first time we came for immunotherapy in 2016! Sure enough - scrolled through my phone and found a pic of nori. Asked her to recreate it… she’s still super cute 😊🩷
During the testing, Norah fell asleep for awhile. Then she would wake up, have some water and then fall back asleep. Meanwhile, there were a lot of people coming in and out. Some other doctors, some of the long term care team, nurses, Jen from child life who used to help Norah with dance and music prior to getting her vaccine, my favorite nurse Christine - who I haven’t seen in years. Lots of people to talk to- I was so happy to see so many familiar faces!
Testing was done by noon but we had an appointment with a new doctor - she is a pediatric rehabilitation physician. She helps kids who have some motor skills or mobility issues after cancer treatments. Her exam with nori took about 45 minutes and then we were off to get another xray of Norah’s hand. They take measurements of the bones in their hands to determine potential growth and/or if their body is done growing. This will also help with any growth hormone treatment. After that we had to go get Norah’s mibg injection which took another 45 minutes or so. By the time we got back to the RMH it was 3pm. We had left at 6:30am. Boy were we wiped out! We came back to our room and had some quiet time. Norah ended up falling asleep again. Twice. Took her awhile to sleep off those meds!
After we had dinner we went down to the playroom to see Miss Nadia. She was soooo excited to see Evie - she hadn’t seen her since Evie was 7! Nadia introduced me to some parents whose kiddos are early into this journey. It was a bit of a role reversal for me - I remember seeing the families come in and I didn’t recognize them because they would pop in once or twice a year. Unlike us - we were there monthly for many years. I remember talking to the parents - how did they make it through this? How did they handle the emotional torture of it all? How did they navigate the separation from their partner? How did their other children handle everything? I had so many questions and I wanted to know everything that helped them. I wanted to be in their shoes someday all the while knowing that I had absolutely no control over that. I always loved seeing their kiddos. Seeing how they had grown. Seeing that they had been out to do fun things like going to see something on Broadway or going to Times Square. They weren’t staying at the RMH day after day because their kiddo was receiving treatment that left them wiped out for the rest of the day. They actually got to treat visits to nyc as a fun experience. I had prayed for so long to be one of those families. Talking with these parents I just met and seeing the same looks on their faces when I told them Norah’s journey and then they look at her…. Their faces were Incredulous…..Hopeful. They were me 10 years ago. 🩷
After that, we went to the candy shop across the street from the RMH which always reminded me of the candy shop from W***y Wonka - the original with Gene Wilder. It’s so cute in there and its floor to ceiling candy! It’s fun going there. The shop owner is the same since we started coming here and he no longer allows people to come into the shop since it’s so tiny and he runs it alone mostly, but when he found out we are staying at the RMH, he let us come in and shop! He’s always been incredibly kind to the RMH families.
We turned in early hoping to get better sleep. I think the building next door could’ve been torn down and I would’ve slept through it! I was exhausted. Thankfully we didn’t have to be up early this morning since Norah’s scan wasn’t until 1pm. It was nice to be able to sleep in a bit and not have to race around early in the morning.
We weren’t taken back for Norah’s scan until 2pm which really threw a wrench in our afternoon plans. Norah’s scan went fine - no issues. Now we wait. And this is truly the hardest part. We ran into dr modak when we went up to the Peds floor to have Norah’s IV removed - he chatted with us for a little bit and took a pic with Nori. We headed back to the RMH after that. We had planned on going down to Times Square after scans were done but considering we ended up leaving close to 2 hours past the time I thought we would be leaving Msk AND we were in a severe thunderstorm warning, we went back to the house. We made it back just as it started to sprinkle…. Seconds later it was a crazy downpour!
Tomorrow we see our endocrinologist to go over all the testing and then we will pack up and go home! Yay! 😊
Thank you all for your love and prayers for nori today 🩷
