Advocacy, Uncertainty, and One Very Important MRI

Our rainbow gal arriving for her 4th round of chemo 🌈

I realized recently that our last update here was just a month ago, which feels impossible given how much has happened since then. The weeks that followed have been some of the most intense, confusing, and emotionally exhausting of this entire journey.

The day after Christmas, Bea moved forward with her first round of high-dose chemotherapy, followed by stem cell rescue. The chemo itself was pretty brutal. She developed severe mucositis— sores in her mouth and throat that made swallowing and talking very painful. Those were some of the hardest days. Thankfully, the Pediatric Advanced Care Team stepped in quickly and worked tirelessly to dial in the right combination of medications. Once they found the right balance, she was finally comfortable, and we could all breathe again.

One bright spot during that stretch: her stem cells engrafted very quickly. Her counts came back up faster than expected, which is always a huge milestone after high-dose chemo.

We were discharged home and so grateful to have time together outside the hospital—real meals, real beds, her sister, fresh air. But that time at home ended up being overshadowed by devastating news.

A follow-up MRI found a new lesion on the left side of her brain, which was read at NYU as definitive tumor recurrence and dissemination. We were told with certainty that her treatment plan needed to pivot immediately to craniospinal irradiation (CSI) — a very intense radiation treatment with significant long-term side effects. It was presented to us as not really a question. We were heartbroken. It felt like the rug had been pulled out from under us just as we thought the chemo was working.

We decided to seek an outside read from MSK. Their interpretation was very different: they felt the findings were more consistent with a vascular event (a small vein/clotting issue) rather than tumor spread. Despite that, NYU stood firmly by their original interpretation.

Because of the urgency and the stakes, we moved forward with CSI planning while still trying to reconcile these conflicting opinions. We took Bea to the New York Proton Center for mapping and simulation—preparing for a treatment that, once started, can’t be undone.

But given the uncertainty raised by MSK, we advocated hard for additional imaging and diagnostic clarity before committing to CSI. The plan became: a lumbar puncture, another MRI, and—if needed—a biopsy.

That second MRI, on January 23rd, changed everything.

The lesion on the left side—the one that drove the fear of tumor spread—had shrunk significantly. So small that the neurosurgeon wouldn’t have been able to biopsy it, even if they wanted to. That single finding shifted the entire conversation.

With that new imaging, the consensus from MSK and Boston Children’s became clear: this looks far more like a venous or vascular process, not disease progression.

I cannot overstate how relieved we are that we pushed for more imaging. Had we not, Bea might already be receiving craniospinal radiation for something that wasn’t tumor.

And so—once again—the plan changed.

Instead of pivoting to CSI, we are now back on track with treatment, and Bea is currently admitted for her second round of high-dose chemotherapy and stem cell rescue (her 4th round of chemo overall).

This stretch has been a master class in how nonlinear and uncertain cancer care can be, especially with rare pediatric tumors. It has required us to ask hard questions, tolerate enormous ambiguity, and advocate relentlessly—sometimes in moments when we were already exhausted and terrified.

We are deeply grateful to the oncologists and radiologists who were willing to question assumptions, and to follow the data wherever it led. And we are so grateful for every message, meal, and support that has carried us through these weeks.

As always, we’re taking this one step at a time. Right now, the step in front of us is getting through this next round of treatment, and dreaming of having our girls back together again soon.

With love,

Shannon & Brooks