the Reality of the Long Road
It has been way too long since our last full update here on the blog. While I try to share quick moments on Instagram when I can, so much has unfolded since January that it deserves a full, honest post.
If you’ve followed Kai’s journey, you know how fast light can turn to heavy in pediatric cancer. Looking back over these past eight months, our family has walked through incredible highs, devastating setbacks, and the most intense physical fight Kai has faced yet.
Winter Stability & A Brief Reprieve
At the start of the year, we were standing on solid ground. January and March scans both showed stable healing following his 65th round of radiation. Because of that stability, our medical team gave us clearance for a dream family trip to Costa Rica.
With a local hospital on standby just in case, we took the leap. Watching Kai soak in the beauty of the world outside clinic walls, breathing in the warmth and freedom of pura vida, gave us memories we will hold onto for the rest of our lives. Many tears were shed while writting this.
The Unthinkable Setback: Losing Tazemetostat
On April 1st, our world took a sharp, terrifying turn.
Tazemetostat—the exact medication that had been keeping Kai’s cancer at bay—was taken off the market in late March due to secondary cancer toxicity risks. Suddenly, we were completely out of options to obtain the single drug keeping him safe.
Without it, May 28th scans confirmed our worst fears: progression, specifically showing leptomeningeal disease.
We immediately restarted intra-Ommaya Topotecan. But after two grueling rounds, July 22nd scans showed major leptomeningeal spread throughout Kai’s brain and—for the very first time—into his spine.
We were crushed.
Symptoms hit Kai fast and hard. He could no longer stay upright for very long, wracked by severe, debilitating headaches. Our oncologist gently but firmly laid out the reality: even though we had spent years trying to protect Kai from Craniospinal Irradiation (CSI) due to its heavy long-term risks, it had become our only remaining line of defense to keep him alive.
25 Rounds of CSI, a Seizure, and the Emergency Hospitalization
The team worked with unbelievable speed, setting up his SIM and scheduling an August 11th start date.
Then came the morning of August 11th. Right after his very first CSI treatment, Kai suffered a major seizure event.
He was immediately admitted to the hospital, where we spent five painful days in close monitoring. The rapid swelling and severe inflammation from the disease were triggering extreme neurological symptoms. To save his life, we had no choice but to push forward with treatment while managing the brain swelling with high-dose steroids.
Day by day, as the steroids took hold and the radiation began targeting the leptomeningeal disease, Kai started to stabilize. Through sheer grit, Kai fought his way through all 25 rounds of full-brain and spinal radiation.
Thankfully, we were able to successfully taper off the steroids after nine days. He remains on Keppra for seizure control while we wait to see when it will be safe to wean him off.
Where We Are Today: What CSI Leaves Behind
Right now, Kai is taking a much-needed break through October. His head and spine look like a severe, painful sunburn—peeling, discolored, and uncomfortable.
Because his swelling has eased up for the moment, October gives us a small window where he feels okay enough to enjoy being six years old—like going to preschool for a few hours a day. Seeing him sit in a classroom with other kids is a gift I don't take for granted for one second.
But we know what’s coming next. Towards the end of October, we expect the delayed radiation onset effects to hit—nausea, fatigue, and behavioral shifts from the sheer trauma to his central nervous system. We saw a version of this after his first radiation experience years ago, but that was 25 rounds of focal radiation. This was 25 rounds of full CSI—radiation to his entire brain and full spine.
The doctors admit there is so much they simply don't know about how a child's brain and body recover from this level of treatment. But we know the permanent trade-offs:
His spine will no longer grow normally. He will remain very short in stature because the growth plates in his vertebrae were permanently damaged to stop the disease.
Developmental impacts: If we are lucky enough to watch him continue to flourish through the years, we know we will be navigating developmental delays and cognitive shifts along the way.
We gave up a piece of his future to keep him here today.
November Scans & The Double-Edged Sword Ahead
We will monitor his blood work closely through October, heading into comprehensive scans in November that will dictate our next steps:
If the scans show no evidence of disease: We will give his body more time to heal or potentially start a modified version of the MEMMAT protocol he has done previously as maintenance.
The double-edged sword: There is a promising clinical trial we are currently seeking compassionate use approval for. However, if his November scan comes back completely clear, he will not qualify to start the trial until disease presents itself again. That’s an impossible sentence to write.
It is one of a thousand impossible, agonizing paradoxes in childhood cancer: hoping with everything you have for a clear scan, while knowing a clear scan locks you out of the very trial you hope will protect him long-term.
How You Can Stand With Us
Living in sustained, high-alert survival mode for almost 6 years takes every single drop of strength a family has. Caring for Kai requires 24/7 focus—making traditional work tough (but we are doing it) and making everyday financial survival a secondary trauma that haunts families behind closed doors.
We are only standing because this community continues to hold us up. If you have walked alongside Kai’s fight, here is how you can continue to stand with us right now:
Hold Us Close: Keep Kai in your heart through October as he navigates preschool and the upcoming wave of side effects, and hold space for clear, stable news in November.
Donate Blood Products: If you are able, please consider donating blood products to your local children's hospital.
Donate to Research: Choose a research foundation for childhood cancer and give whatever amount you can. Even a small amount goes far.
Be His Voice: Share Kai’s story. Look past the quick, polished social media updates and speak up about the brutal reality of pediatric cancer treatment. Advocate for real funding and safer treatments so families aren't forced to destroy their child's body to save their life.
Thank you for loving our boy, for holding space for our family, and for walking this brutal, beautiful road with us.
With all my love and gratitude,
Melissa & Kai 💙