Treatment Roadmap
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The Blick Family
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The Blick Family
Today was a really productive—and hopeful—day for Team Jonah.
Every Tuesday, Jonah has his weekly oncology appointment where they draw labs, Dr. MacDonald evaluates him and we have time to ask all of our questions. His bloodwork was perfect today, and Dr. MacDonald continues to be amazed by how well he looks and how incredibly he is handling radiation. His only real side effect so far is that his hair has started falling out in the area receiving proton radiation.
And if you want to know how Jonah is feeling… he was literally playing football with his friends in someone’s backyard last night. This kid is AMAZING.
Today we also got much more clarity on the roadmap for what comes next.
Dr. MacDonald has now spoken with the other doctors on Team Jonah—Dr. Mariella Filbin at Dana-Farber, Dr. Elias Sayour at UF and Dr. Maria Castro at the University of Michigan—and they are all aligned on a recommended treatment plan.
We know a roadmap is just that—a roadmap. Things can change based on Jonah’s response, blood counts, timing, delays and new information. But right now, we finally have a path forward that this incredible group of doctors believes in.
Jonah’s last radiation treatment is scheduled for October 21. After a short recovery period, likely about 2–3 weeks, the plan is to begin the next phase of treatment with a combination of oral chemotherapy drugs, TMZ (temozolomide) and lomustine. The current plan is six cycles, with each cycle lasting approximately six weeks.
Beginning with the second cycle, they plan to take an even more aggressive approach by adding a third drug, everolimus, gradually increasing it while watching closely to see how Jonah tolerates it.
One of the reasons we feel hopeful about this plan is because we were incredibly fortunate to have enough tumor tissue from Jonah’s surgeries to test his actual cancer cells against potential treatments. While testing suggested TMZ alone had limited effect on his specific tumor, the combination with lomustine showed a much more encouraging response. Based on characteristics of Jonah’s tumor and a specific mutation he has, Dr. Filbin also believes everolimus could add real benefit.
Dr. MacDonald feels this gives us a thoughtful balance of being aggressive against the cancer while still prioritizing safety and Jonah’s quality of life.
Because these medicines can suppress his immune system and treatment sometimes has to pause while blood counts recover, six cycles could take approximately 8–9 months to complete. And because this exact three-drug approach is new for Jonah’s team, they will introduce the everolimus carefully and monitor him very closely.
We also know this next phase may look different from radiation. There could be days of fatigue, nausea, diarrhea, mouth sores, hair loss or other side effects—or Jonah may surprise us yet again. Every child responds differently, and we will deal with whatever comes as it comes.
Jonah is understandably not thrilled about buzzing his hair, so we’re letting him take the lead. He’ll tell his parents when he’s ready, and we’ll follow his timeline. Both his radiation oncologist, Dr. Eaton, and his primary oncologist, Dr. MacDonald, have confirmed that he will continue to lose his hair as treatment continues—but if he needs a few more days to process that, then a few more days is exactly what he gets.
Jonah is understandably not thrilled about buzzing his hair, so we’re letting him take the lead. He’ll tell his parents when he’s ready, and we’ll follow his timeline. Both his radiation oncologist, Dr. Eaton, and his primary oncologist, Dr. MacDonald, have confirmed that he will continue to lose his hair as treatment continues—but if he needs a few more days to process that, then a few more days is exactly what he gets.
Randi and I, of course, offered to buzz our heads right alongside him. In true 14-year-old Jonah fashion, he looked at us laughing and asked us why we are so stupid.
So apparently, our solidarity has limits.
Our incredible Stefanie, who unfortunately learned far too much about managing treatment side effects when her own daughter Layla went through leukemia treatment, is already running point on helping us stay ahead of everything medical. She is truly an angel and honestly should have been a doctor.
Once treatment begins, keeping Jonah—and everyone around him—as healthy as possible becomes even more important. A fever would mean a hospital admission and potentially delay treatment, so as we get closer, we'll share some simple ways everyone can help us protect him. The goal, though, remains the same: Jonah will continue going to school, seeing his friends and BEING A KID for as long as he feels up to it.
We’re even preparing the house for this next chapter. Micah is going to move into Jonah’s current room and share the bathroom with Logan (although considering he sleeps in Randi’s bed anyway, who are we kidding). Jonah will get the other room so he can have more privacy and his own bathroom if he's not feeling well. We're also turning the little attached room into his own lounge with a couch and big TV. He doesn't know yet, so SHHHH—we're hoping to make the room swap a little fun surprise.
And while all of this is happening, Dr. Elias Sayour and his team at UF are simultaneously working toward creating a personalized vaccine for Jonah. That process could take several months. The other trials and treatments we’ve been researching aren't disappearing either—they remain our Plans B, C, D and beyond. We even have doctors in Israel reviewing his files for their expert opinions. We are leaving no stone unturned. We are determined to stay several steps ahead and be ready for whatever comes next.
But the biggest takeaway from today?
It was a hopeful appointment.
Dr. MacDonald feels good about this plan. He reassured us that we are doing everything we should be doing and shared that he has other patients who have seen encouraging results with components of this treatment approach. He encouraged us to keep believing in the plan and to keep hope at the center of all of this.
And that's exactly what we're going to do.
We keep hoping. We keep praying. We keep loving the Blicks. We keep making memories. And we keep going until we get the outcome we're all fighting for.
Thank you to every single person who continues to ride alongside this family. Even when they can't respond to every text, call, meal, prayer or act of kindness, I promise you—they feel it.
And tonight, thanks to Matt Wollner, Jonah and Adam are headed back to the Braves game to make another memory together.
GO BRAVES. And GO JONAH.
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