Kinlee’s Krew

09/22/2025

These kids deserve just as much attention. September is just as important as October.

09/21/2025

Devastating news this morning… I remember the hundreds of messages I received about Lucas when Billy was sick, and whether we could access the same medication (everolimus) to save Billy’s life too. DIPG brain tumours are all so different, what works for one, won’t work for another, and the few trials out there are incredibly hard to access, especially if you have ruled yourself out by rushing into radiotherapy.

There is no easy way forward when the clock is ticking against you. And now this. Sending all the love to Lucas and his family. I really hope ONC works its magic.

——

Lucas, the first child in the world to beat brain cancer considered incurable,” has relapsed...

Here’s the latest news from Lucas, now 14 years old (almost fifteen at the end of the year), and whom everyone thought was “cured,” including his doctors:

He was diagnosed in August 2017 with at the age of six...and treated with everolimus.

“To our friends and family who are asking for news 💌:
After 8 wonderful years of stability, during which doctors even spoke of a cure 🙏, Lucas unfortunately suffered a relapse of his disease last June. He is once again being monitored by the Institut Gustative Roussy in Paris and has already completed several important milestones: a second brain biopsy, then 18 radiotherapy sessions, which he courageously completed 💪.

He has now started a new treatment, ONC201 💊, and we hope it will bring positive results. 🤞✨.”

09/19/2025

09/16/2025

09/16/2025

It’s Tuesday, so you know what that means!

09/12/2025

Kinlee got to FaceTime with the Stephen F. Austin State University Ladyjacks today! She can’t wait to get to hang out with them!

09/02/2025

It’s Tuesday, which means it’s our weekly Pink for Stink day, so naturally we parked on the pink level!

09/01/2025

’Twas the night before September, when all through the land,
Families of warriors held hope in their hand.
The ribbons were hung by the front doors with care,
In honor of children so brave, fighting there.

The parents lay restless, their thoughts far and deep,
Of battles and treatments, of nights without sleep.
With memories of laughter, of hospital halls,
Of courage that echoes through sterile white walls.

When out in the world there arose such a call,
“Go Gold this September—bring hope for them all!”
And hearts lit with purpose, as candles were shown,
For children whose courage outshines what’s been known.

For these are the heroes, though tiny in size,
With strength in their spirits and fire in their eyes.
And September reminds us, though trials are unfair,
That love must bring healing, and hope must be shared.

So don your gold ribbons, let awareness ignite,
For childhood cancer—let’s all join the fight.
And whisper a prayer for each brave boy and girl,
The true little warriors who brighten this world.

🎗️🎗️