Today's Update

18 Down Tomorrow 💙

Jonah continues to handle radiation incredibly well, and tomorrow will be day 18! We’ve started noticing a little thinning in the area being radiated, so we’re keeping an eye on it. Our amazing hair stylist Nina has already offered to come to the house and give him the coolest buzz when the time comes—but we’re not quite ready for that step yet.

This weekend was filled with family, friends and some much-needed FUN. Thursday night we went to Game 3 of the Braves series, and that incredible win gave us a night we all desperately needed. Adam, Jonah and Logan were there with me and my kids, Brittany and her son—and for the first time since Jonah’s diagnosis, I saw Adam really, truly smile. That alone made the night unforgettable. Yesterday’s Gators and Braves losses did NOT help keep those smiles going -  so we’ll be pulling extra hard for a Braves win tonight.

Jonah and Micah have this next week off school for Fall Break and Logan is headed to Charleston with his Davis class trip tomorrow.  While Jonah cannot go out of town because he has radiation every day - we know his friends have plans to hang and make the best of our time here.  Jonah is going to try his skills at Clay Shooting for our YES DAY Clay Shoot on Thursday with Ozzie and Adam - I am sure this will be a lovely new hobby of his!  Aunt Dana is taking Micah to Bubbie Susie's lake house tonight for two nights for a little stay-cation and Grammie has moved to town to be here for anything needed!  A few of Randi's best friends from college (Aephi always) are headed here for the weekend - so our village continues to be truly amazing.

This is a really big week for Team Blick.

Over the past several weeks, we have talked with some extraordinary doctors and researchers, and we now have an incredible group working together to build a comprehensive treatment roadmap for Jonah. Dr. Tobey MacDonald at CHOA is our lead here in Atlanta—we call him our “quarterback”—and he is collaborating closely with Dr. Elias Sayour at the University of Florida, Dr. Maria Castro at the University of Michigan and Dr. Mariella Filbin at Dana-Farber/Boston.

Each brings different expertise, ideas and possibilities to the table. As we’ve shared before, there simply isn’t a proven roadmap for Jonah’s cancer that has produced the kind of outcome we are fighting for.

So we are creating our own.

On Tuesday morning, we have a big meeting with Dr. MacDonald where he will walk us through the collective recommendation for what comes after radiation—and what comes after that. They are looking at multiple possibilities, including oncolytic virus trials, personalized mRNA vaccines, combinations of chemotherapy drugs, checkpoint inhibitors and cellular therapies, and figuring out how these pieces might fit together while navigating timing, washout periods and, importantly, Jonah’s quality of life.

There are still so many unknowns. But I believe with everything in me that the plan being created for Jonah will be uniquely his—and I hope that what these brilliant people learn by refusing to accept the existing limits will someday help other children facing this devastating diagnosis too. We know how incredibly fortunate we are to have the network and resources to bring these doctors together and, even more importantly, doctors willing to collaborate, think differently and fight alongside us.

And I want to share one more thing because so many of you ask, “How are the Blicks doing?” “How are you doing?” “How is everyone at the house?”

The real answer is complicated.

We are positive. We believe deeply in medicine and science. We believe in the miracle business. We laugh, go to baseball games, talk about football and do everything possible to keep life feeling like LIFE for Jonah and all the kids.

But the truth is, this is really, really hard. 

We are all scared and sad and trying to take this one day at a time without putting that fear onto Jonah or the other kids. Jonah looks to his parents to know that he is okay, and Randi and Adam give him that safety every single day.

So when you ask them how they're doing and they say, “Okay,” just know that there is nothing okay about what they are being asked to carry right now. 
 

Please keep showing up. Keep checking in. Keep sending the texts, even when they don't respond—I promise you, they read them. Keep including them. Keep making them laugh. And most of all, please keep praying for Jonah and believing alongside us.

Watching your best friends and their children walk through something like this is a nightmare without words. I cannot begin to imagine what it feels like to wake up in their shoes every morning.

But they aren't walking through it alone.

18 down tomorrow. One day at a time. And we keep fighting.

I’ll share another update after Tuesday when we hopefully have the beginnings of Jonah’s roadmap forward.