Stable Scans, Pura Vida, and the Reality of the Long Road
It has been a few months since our last update in October, and so much has happened in Kai’s world. While I try to keep everyone updated on Instagram, some milestones deserve the space of a full post.
Highs, Lows, and Tazmetostat
Shortly after our last update, we started Kai on Tazmetostat. To be honest, the first month was incredibly brutal. Kai endured nearly every side effect imaginable, and seeing him struggle through that transition was heartbreaking.
However, we received a beautiful "win" at the end of November. Kai’s two-month scans showed stable healing from his 65th round of radiation. Because of that stability, we were given medical clearance for a dream trip to Costa Rica. With a local hospital on standby just in case, we took the leap. The memories we made there—watching Kai experience the world outside of hospital walls—will truly last a lifetime.
The Current Struggle: Labs and Fatigue
Coming home has meant getting back into the swing of medical reality. Last week’s labs showed that Kai’s bone marrow is struggling to keep up; his counts are dipping to just above transfusion levels. His electrolytes are also impacted, and we are likely starting supplements to keep his potassium and phosphorus levels where they need to be.
You can see the toll it takes on him. He is fatigued, though in true Kai fashion, he still finds bursts of energy to play with his brother and his friends at school for a few hours. Lately, he’s been fascinated by colors, shapes, and letters, so we are leaning into "learning play" to support that bright, curious mind of his.
Five Years of Survival Mode
January 28th marks five years since Kai’s diagnosis at just seven months old. On one hand, I am in awe of his impossible strength. On the other, I am feeling the deep, bone-weary fatigue of living in sustained survival mode for half a decade.
Because Kai requires full-time care, I am unable to work a traditional job. I have some flexible admin work, but it isn’t enough. Navigating government assistance has been an uphill battle, and the financial strain of childhood cancer is a secondary trauma that many don't see.
How You Can Help
We have scans at the end of this month, and we are holding our breath for the best. If you have followed Kai’s journey, we ask for your support in three ways:
Hold us close: Keep Kai in your thoughts as we head into these scans.
Support our fight: If you can, please donate a dollar to our GoFundMe. Any amount—truly, even one dollar—helps us stay afloat while I care for Kai.
Advocate: Tell Kai’s story. Call your representatives and demand more funding for childhood cancer research. No family should have to walk this path alone or feel the weight of a broken system while fighting for their child’s life.
We are only here because of this community. Thank you for your one love.