As teased in the last post, Noah had some work done on his bedroom. The media from that work is in, so I can share it here, and there are also a number of other fun happenings.
From what I’ve seen/heard, the most recent post ended up in recipients’ spam folders. This was likely due to some Internet bot behavior. I’ve made some changes to hopefully counteract that, but the damage has probably already been done, and the notification for this post will also be in spam. If you happened upon this post anyway, make sure to fish the email out of your spam folder and mark it as not spam.
I typically start with a medical report. There’s not much to report this time because we haven’t gotten this month’s labs yet. Clinically he has seemed good, though, with solid energy.
A real big step was that this morning he had his first cross country race of the season. When this all started last September, Noah was a couple weeks into cross country season and the inability to run much at all was one signal of “something’s wrong.” Micah was in cross country last year too, and those meets, especially the first few, were real tough for me. Cross country is more personal for me anyway, but this was a particularly strong contrast: happy and healthy kids on a Saturday morning, followed by an isolated hospital room a few hours later.
Anyway, it was an emotional start to the race today. It’s slow going, but Noah finished the race and didn’t walk. Yet another thing we didn’t know if we’d ever see again. We’re looking at cross country season as a fun team sport (which it is!) in which he can gradually build up strength. Also, as you can see in the photo below, he lost a shoe during the finishing sprint.
To the room renovation! A local organization, The Gold Ribbon Collective, has a mission of transforming the bedrooms of pediatric cancer patients into peaceful and healing spaces. Noah was lucky enough to be chosen by this group, and planning for the room started about a month before construction began. The team sat with Noah and learned about what he likes and who he is.
Once it was time to do the work, we were provided a hotel room downtown and tickets to fun events like the Children’s Museum, an Indianapolis Indians baseball game, a movie, and others we’ll continue to use. Meanwhile, the team was rapidly renovating the room. All of this was done in just a 24-hour span; sounds really stressful to me, but they pulled it off — and it is rad! I wanted to change it to my office, but was denied that request. You can see the finished result in the video below…
The entire experience was amazing. There was just a ton of attention to detail — from custom cookies to gifts for Micah to much-needed mulch in our yard. The team was so caring, and we felt the love and how much this meant to them. We thank them and all the Collective partners. I’d also note that if you want a very professional room, kitchen, or bathroom renovation you should hit them up.
September is Childhood Cancer Awareness Month, so there are a number of things going on:
- The Great Cycle Challenge is taking place. Cyclists ride a bunch of miles during the month to raise money for fighting kids’ cancer. A local rider, Dirk Cushing, has been doing it for the last 10 years and, this year, is riding for Noah. He’s a very nice guy and cares a lot about the mission. It looks like he’s pretty well on track for his mileage goal, which is impressive considering he has a broken toe.
- This Thursday, Noah’s doctor, Dr. Razzouk, will be receiving a $100,000 Hyundai Impact Grant to support pediatric cancer research, treatment, and care at Peyton Manning Children’s Hospital. Noah will be speaking at the event for a few minutes about his experience with Dr. Razzouk and his care team at PMCH. Noah will also put his handprint on a lab coat worn by Dr. Razzouk and a white vehicle outside the lobby. The Pediatric Hope Project has provided Noah with a wonderful tutor, Aya, since he’s been out of the hospital and the primary focus has been on writing skills, especially this upcoming speech.
- Last September, when Noah was in his first round of chemo treatments, a lot of our neighbors took part in the Light the Night walk. That period of time kind of seems like a fever dream at this point, but the compassion we felt will forever remain. We’re excited to be part of that next Saturday and will have a team that includes Noah this year!
- A few weeks ago, the Caitlin Clark Foundation celebrated the launch of Turning Pages, Healing Hearts at Peyton Manning Children’s Hospital. There was a ribbon-cutting ceremony for a book vending machine and program kickoff. There is a picture below, but there are a couple professional pictures on the Foundation news post that include Noah and Micah (not smiling for the picture of course).
That’s probably enough for now. I’ll try to report back and include pictures from these events, as well as the next monthly labs, featuring all the ANC, platelet, and hemoglobin hits. We love you all and over and out.
