Just days before radiation was set to begin, everything changed.
Jan-Blaise’s shunt failed suddenly, triggering a rapid and critical medical emergency that left his family facing the unimaginable.
His condition deteriorated quickly. By the time he arrived at the emergency department, he was already seizing. His left pupil dilated almost immediately — a devastating sign. Doctors believe he aspirated during a second seizure and required extensive rescue medications to stabilize him.
The family made a frantic, fear-filled ride home, holding their son in the front seat of the truck, wrapped in a warm hospital blanket — unsure if he would survive the journey.
Against the odds, Jan-Blaise made it home.
But the return was not one of recovery — it was one of comfort.
Doctors determined that another surgery would likely not restore the child his family knows. The risk was too great, and the outcome too uncertain. Instead, the focus shifted to keeping him comfortable.
Jan-Blaise is now receiving continuous medication through a PCA pump, delivering round-the-clock pain control after oral and IV medications were no longer enough. It is the hardest stage of his journey yet — not because of the machines or medicines, his family says, but because of what it represents.
“This is the most excruciating pain we’ve ever known,” his family shared. “Losing him is what follows.”
They are now navigating constant respiratory secretions that cause a persistent gurgling sound when he breathes — a sound they describe as unbearable, a reminder of how helpless it feels to watch someone you love suffer. Despite deep suctioning and medications, they can only hope for relief.
Jan-Blaise remains on continuous medications to prevent seizures and neurological storming. Doctors do not believe he will regain lucidity. His parents had hoped, desperately, to see his beautiful green eyes open one last time.
That moment may never come.
Still, they speak to him — telling him how deeply he is loved, how much joy he brought into their lives, thanking him for being their sweet boy. They hope he can hear them. They pray he is not afraid, not in pain — only surrounded by comfort and peace.
On Tuesday, the feast day of St. Blaise, Jan-Blaise received a blessing of the throat from Father Chrismer. The family describes the moment as sacred and profoundly meaningful — a grace they will always carry with them.
Now, they ask for prayers — not for miracles, but for mercy.
“Please pray for his comfort,” they wrote. “I cannot stomach the thought of him suffering anymore.”
They are broken, they say — but they want every prayer focused on Jan-Blaise
