Reflections from the CNCF Conference
What a weekend this has been—truly insightful and richly rewarding. For those who didn't read last week's entry, Nat and I (along with Murphy and Ted) attended the CNCF (Children's Neuroblastoma Cancer Foundation) annual conference in Washington D.C.
This unique conference is designed specifically for parents of children with neuroblastoma. It brings together speakers from leading studies and advancements globally, and was held in D.C. this year because it coincided with the Annual Neuroblastoma Research (ANR) conference. The ANR conference is for medical professionals dedicated to advancing neuroblastoma treatment. When I learned there were over 1,000 delegates at the ANR conference, I fought off a strong wave of emotions—1,000 doctors, scientists, investigators, and medical staff working around the clock to find better solutions for kids like Murphy. For every one attending, there are countless more back at their labs and hospitals. This weekend immersed us in information that, for the most part, gives us hope for the future. Thank God.
I'm grateful for the means to experience this weekend. I honestly wasn't in a position to afford it, but as the conference approached, I asked a close friend for help. A quick "of course" meant tickets were booked. Thank you to that friend, and thank you all for your continued interest in our boy's journey.
The Journey
Our weekend began Friday night flying from Charlotte to Maryland. I managed to get the boys safely on the plane, but Murphy had a rough landing and vomited. In my motion-sick state and with Murphy's worsening cough, it was a very quiet Uber ride to the hotel. After dinner, we raced to our room to wind down. In true dad fashion, I spoiled the boys with ice cream before bed.
Saturday morning, we ventured to the conference. Not knowing what to expect, I was unsure how the boys would cope in the kids' room. But they quickly ran off, made friends, played with toys, and were looked after by wonderful volunteers. I grabbed coffee and prepared for what became a mountain of stats, data, graphs, and complex medical terms.
From the first few minutes, I was struck with mixed emotions. I didn't want to be there learning about this disease or for Murphy to have gone through it. But I was also in a room with 50 other parents, listening to world leaders fighting for a cure. That emotional moment returned regularly as memories swept me back to Murphy's toughest fight between 2022 and 2024—the effects he still experiences today. The medications, scans, weight loss, muscle depletion, complications—the list goes on.
Key Learnings
Let me share some of what I learned over those two days:
Medical Advancements: If Murphy was born 30-50 years ago, his chances of survival would have been drastically different. There have been huge advancements in the COG (Children's Oncology Group) protocol.
Ongoing Research: Doctors and investigators aren't resting. They're still not satisfied with current survival rates or the toxicity of existing treatments.
Three Promising Trials:
CAR T Cell Therapy: Led primarily by St. Jude Hospital, this treatment is mind-blowing when you understand how it works.
DFMO: Recently approved for use but still under trial to explore additional applications within the protocol.
Vaccine: A single-site study from Memorial Sloan Kettering (MSK) Hospital showing promising results.
Late Effects Studies: Growing focus on reducing treatment toxicity. Current treatments can cause reduced growth, kidney issues, and lung problems.
Combined Treatments: Chemotherapy and immunotherapy together—once considered impractical 20 years ago—is now being tested worldwide. At MSK, they're using different induction treatments hoping to avoid high-dose chemo rounds that accompany stem cell transplants. This was difficult to hear, as Murphy's hearing loss is directly linked to those early treatments.
Improved Scanning: MFBG scans are showing great results, meaning future patients won't need iodine infusions 24 hours before scans, and scan duration will drop from 2 hours to 10 minutes. Imagine how much less medication Murphy would have needed!
Liquid Biopsies: Nat and I were excited about these findings. CHOP has developed a test using small patient samples to discover ctDNA (circulating tumor DNA). This can track and detect disease earlier, meaning earlier treatment and hopefully more lives saved.
Reality Check
As positive as this information was, we also heard the harsh reality: while doctors work to beat cancer, the cancer itself is getting smarter against new treatments.
What moved me most was hearing each presenter share their journey into neuroblastoma research. Each time, I was a mess. At one point, I had to go to the back of the room to collect tissues for Nat. We weren't moved by the science of discoveries, but by the people who have dedicated their lives to fighting this disease. Their sacrifice is truly inspirational.
A Lighter Moment
I'll end with a funny story from Saturday's dinner. We shared family-style plates of pasta, chicken, and roasted vegetables, but Murphy wasn't enjoying anything. The appetizers came and went, the pasta looked too "smelly," and the creamy chicken was forgotten. I turned to UberEats, ordering nuggets and fries to be delivered to our restaurant. When ready, I snuck outside, hid the food under my sweater, and felt like a CIA agent smuggling something precious into the private function. This mission was met with a huge grin and a full stomach. Maybe I should research how to get kids to eat more vegetables—though that's not a cancer-related phenomenon, it's an age-old problem!
Thank you for reading. It's been helpful to consolidate two days of intensive learning into something more digestible.
God is good!
Daniel
