The Architecture of Hope: Radiation, Resilience, and the Race for NED
The fluorescent lights of a consultation room have a way of stripping everything down to the essentials. In those moments, there is no small talk—only data, timelines, and the heavy, rhythmic beat of a mother’s heart. We just walked out of our meeting with the radiation oncologist, and the path forward is set. Next week, we begin radiation. We will be targeting both the neck and the side of Jazzy’s head.
It is a heavy realization to swallow. Radiation is a grueling process, especially for a spirit as vibrant as Jazzy’s. But in our world, “heavy” is the baseline. We are moving forward because standing still is not an option.
The Strategic Shift: Comfort vs. Cure
One of the hardest hurdles for any medical parent is the shift in terminology. When we reached back out to Memorial Sloan Kettering (MSK), they were transparent with us: the treatment they can offer right now isn’t categorized as “curative.” In medical terms, that is a devastating word to hear. But in a mother’s terms, it simply means we change our strategy.
If we can’t have a “cure” today, we will fight for “comfort.” We will fight for a reduction in pain. We will fight for the quality of life that allows Jazzy to be a child for another day, another week, another month. We are returning to MSK with the hope that their expertise will help her feel more like herself. Because when she feels better, she fights better.
The Holy Grail: The Road to NED
Why are we pushing so hard through these treatments if they aren’t “curative”? Because there is a finish line we are sprinting toward: NED (No Evidence of Disease). In the world of pediatric cancer, NED is the holy grail. It doesn’t mean the war is over, but it means the battlefield is clear. Our current mission is to use radiation to shrink the tumors and clear the landscape of her body so that we can qualify for the vaccine trial.
This trial is the “What If” that keeps me awake at night. It is the breakthrough we have been praying for. But to get there, we have to clear the current obstacles. We are using radiation as a localized strike to get us to that state of “No Evidence,” providing a window of opportunity to let the vaccine do the long-term work. We are not just fighting the cancer; we are fighting for eligibility. We are fighting for a seat at the table of the future.
The “Everything” Approach: Bridging Science and Nature
If you have followed Jazzy’s journey for any length of time, you know that I am a believer in “The Power of And.” I believe in the power of modern medicine and the power of what the earth provides. We are not leaving any stone unturned.
Starting this coming week, we are doubling down on our holistic and natural protocols. We have already seen some encouraging signs from the “extras” we’ve implemented, and now we are going all in. Our kitchen and our medicine cabinet are becoming a sanctuary of healing. We are integrating:
- Soursop (Graviola): Often hailed in natural circles for its potent properties, we are incorporating this as a supplemental tea to support her system.
- High-Quality CBD: To manage the inflammation and the neurological stress that comes with radiation and the disease itself.
- Healing Teas: Focused on detoxifying the liver and supporting the kidneys as they process the heavy load of medical treatments.
- Alkalizing the Body: Shifting her internal environment to be as inhospitable to cancer as possible.
Some might call it “trying too much.” I call it being a mother. When the “Standard of Care” tells you there are limits, you look beyond the standard. We are creating a 360-degree shield around Jazzy. If radiation is the sword, these natural remedies are the armor.
The Emotional Toll: “I Am Not Ready to Lose Her”
I want to be transparent about where my heart is. There is a specific kind of exhaustion that comes with being a “Medical Advocate.” It is the exhaustion of having to be the smartest person in the room, the most organized record-keeper, and the most hopeful cheerleader, all while your soul is screaming in fear.
I am not ready to lose her.
Those six words are the engine behind every phone call to MSK, every cup of soursop tea, and every hour spent in a radiation waiting room. Jazzy is not just a patient; she is the light of our lives. She is a girl who deserves to grow up, to go to school, to complain about homework, and to see the world.
I will do anything. I will go anywhere. I will speak to every doctor, try every herb, and knock on every door until I find the path that keeps her here. This isn’t just a “medical update.” This is a declaration. We are in the thick of the forest, but we are still walking.
A Call to the Community: The Power of Collective Prayer
To our friends, our family, and the thousands of strangers who have become our digital family: We need you. We don’t just need your “likes” or your “shares”—though those help spread her story. We need your focused, intentional energy. We are asking you to pray specifically for NED.
- Pray that the radiation targets the cancer with surgical precision and spares her healthy tissue.
- Pray that her body accepts the natural remedies and uses them to rebuild her strength.
- Pray that the doors to the vaccine trial swing wide open for her.
When I look at Jazzy, I don’t see a “case study.” I see a miracle in progress. She is tired, yes. She has been through more in her short life than most adults experience in eighty years. But her spirit is still there. When she smiles, the cancer loses for a moment. When she laughs, we win.
Closing Thoughts: The Week Ahead
As we prepare for Monday, our house is a flurry of preparation. We are organizing schedules, prepping teas, and bracing for the side effects of radiation. It will be a hard week. It will likely be a hard month. But we are anchored by the belief that there is a version of the future where Jazzy is healthy, cancer-free, and telling her own story of how she beat the odds.
Thank you for loving her. Thank you for not looking away when the story gets difficult. Thank you for being the wind beneath our wings when we are too tired to fly.
We are trying everything we can. We are giving her the best of science and the best of nature. And above all, we are giving her the best of our love.
Please stay with us. The fight for NED is on.
