Some days it feels like I have things under control—well, more control than most days have allowed over the last two years. And then something happens, and the spiral begins again.
We are good. She is good.
But someone we love is not.
A sweet little boy—one we have grown incredibly close to—has a tumor that is not responding to the same treatment our daughter is on. And it has wrecked me. We adore him. We adore his family. And we are left sitting with the same haunting questions:
Why does this treatment work for one child, but not another?
What do we still not know?
What will it take to find real answers—real treatments—and God willing, a cure?
Pediatric cancer is often described as “rare.” this tumor is labeled rare.
Rare… yeah. So rare that every time I turn around, another sweet baby is diagnosed.
It may not be common, but there is no way we can honestly continue to call it rare. There are too many children. Too many families. Every single day, parents hear the words that change their lives forever. Families trying new medicines. They have to watch as those medicines fail. They are desperately searching for trials. A lot of kids being placed on waitlists. Pleading with doctors. Writing politicians. Doing anything—everything—that might help their child.
Our family is deeply grateful for the families who went before us. There is no question in my mind that we would not be celebrating our daughter’s healing if it weren’t for the risks they took—the families who were first on the trial she is now on. The heartbreaking truth is that the risks they took were likely one of their only options.
There is simply not enough funding to support extensive research for pediatric cancers—especially those deemed “rare.” If it weren’t for a small number of doctors willing to take a chance, to tackle one of the most devastating diagnoses in pediatric cancer, we would still be exactly where we were 40 years ago.
These doctors depend on private donors. Families who have lost their children start organizations to fund research. They are living their own nightmare, yet still trying to save others at the same time. Progress depends on people like you and me, because it cannot depend on federal dollars alone.
Right now, there are 40 children on the waitlist for Seattle Children’s CAR-T cell immunotherapy trial.
Forty.
This tumor waits for no one.
We have to do better.
From the moment of our daughter’s diagnosis, we knew we could not let this diagnosis have any claim over her. We had to speak life over her. When we shared publicly, we shared the basics—brain tumor, no cure—but we always shared hope. Hope because of trials like the one at Seattle Children’s. Hope because we believe God is the greatest physician of all.
Sometimes I wonder if that focus on hope has limited how far our message reaches—if it’s kept me from fully expressing just how urgent this crisis is, and how desperately funding and awareness are needed. Children’s lives depend on change. Real change.
Yesterday, I wrote President Trump. I prayed over that letter before I sent it. I prayed whoever recieved it, would actually share it with him, and not just save it as yesterdays document. I shared details I have never shared publicly, because he needs to understand the urgency of this moment. I will continue to ask God to open doors that only He can open. I will continue to pray—consistently—that He moves mountains.
You’ll see me adding more products to our store. A portion of the profits will go directly toward brain tumor research. My prayer is that one day it won’t just be a portion—that I’ll be able to make a significant contribution toward funding a cure.
Until then, I will keep speaking.
I will keep praying.
And I will keep believing that God is not done yet.