Dustin D

I have been waiting almost 3 years to write these words: NO EVIDENCE OF DISEASE. 🙏❤️ Today we met with Braelyn’s neurosurgeon, Dr. Linda Liau at UCLA (telehealth). When our local radiologist read Braelyn’s August 28 MRI as “no evidence of disease recurrence,” we were thrilled—but I was afraid to fully exhale. I knew Dr. Liau and the UCLA tumor board would scrutinize every millimeter of those images. What if they saw something the local radiologist missed? Today, Dr. Liau told us that she and the tumor board had thoroughly reviewed Braelyn’s MRI. They were amazed. There is NO VISIBLE TUMOR. Even the ~10% Dr. Liau had to leave behind during surgery because of its intimate involvement with critical structures is no longer visible. She emphasized how amazed and pleased the entire tumor board was by such a complete response at this point. Her assessment: the prior radiation and the ongoing DCVax appear to be working very well. Their recommendation after also reviewing the Keytruda regimen Braelyn recently started? KEEP DOING WHAT SHE’S DOING. 😭🙏 First and foremost, we give ALL thanks and glory to God. People all over the world have prayed for this girl. I cannot begin to express how humbled and grateful we are. But tonight I also cannot stop thinking about how close Braelyn came to never having this opportunity. Earlier this year, her tumor was enormous and growing rapidly. We sought help from multiple surgeons—including at prestigious institutions. We were told further surgery was too risky. We were offered the same old options: chemotherapy and photon radiation that would affect most of her brain, given the size of her tumor. Her tumor is MGMT-unmethylated, so for Braelyn, chemo was all risk with little to no benefit. And then a stranger I met here on X changed everything. @ThomasOwenMcCa1 connected us with Dr. Liau. After reviewing Braelyn’s case, one of the first things she said was: “This girl needs surgery right away.” I told her we knew that. We just couldn’t find anyone willing to do it. I asked if SHE would. “If you can get her to me, I will do her surgery.” We got Braelyn to UCLA. Within two weeks, Dr. Liau operated and removed ~90% of a massive tumor spanning three lobes, stopping where continuing would risk critical structures. And this time, her tumor tissue was PROPERLY PRESERVED. That tissue was ultimately sent to England and used to manufacture Braelyn’s personalized DCVax vaccine. She has now received 3 induction doses + her first booster. And today? The tumor that Dr. Liau had to leave behind is no longer visible on MRI. Think about that. And then think about what could have happened if we had simply accepted “there’s nothing else we can do.” THIS is why I will not stop advocating for reform. Patients should not have to find potentially life-saving treatment options accidentally through strangers on social media. Patients should be told about legitimate investigational options when standard treatment offers little hope. Patients undergoing tumor surgery should be informed BEFORE surgery about preservation of tissue that could potentially be used for personalized treatments. And patients should have the right to make informed decisions about which risks they are willing to take. Promising science means very little if the patients who need it cannot access it. Braelyn is living proof of why access matters. Tonight, though, advocacy can wait for just a moment. Tonight I’m her mom. And I finally get to say the words I have begged God to someday let me say: NO EVIDENCE OF DISEASE. Thank You, God. Thank you, Dr. Liau. Thank you to everyone who opened a door, donated, shared her story, fought for her and prayed for our girl. There is always light, even in the darkest places. Tonight that light is shining incredibly bright. ❤️🙏 #DCVaxForBraelyn #CureNotCovered @greta @kshaughnessy2 @andrewcaravello