Many of you have asked if Bryson has passed. I promise I will update you when that time comes. As for right now, he’s still with us.
Per our hospice nurse, it could be another three days, but he also thinks it could be today.Bryson’s body is the ultimate decision-maker, and right now, it’s working in overdrive, navigating a battle we cannot control.
He is in phase 2, the transitioning phase. He’s stopped eating and drinking for the most part.His periods of wakefulness are becoming fewer and farther between, slipping through our grasp like grains of sand.
His breathing is irregular and shallow, each inhale a fragile thread holding him in this world.He’s beginning to get agitated, a sign of discomfort and confusion as his tiny body struggles against the disease.
He’s started pulling dressings off and ripping tubes from his arms, reacting instinctively to the pain and changes he cannot understand.
We are noticing new tumors appearing every day, growing at an alarmingly fast pace, each one a reminder of the relentless cruelty of the disease.
Since coming home one week ago, his morphine drip has been increased tenfold.He started at 0.2 and is now at 2.0, yet we know it may need to go even higher as the hours and days progress to keep him comfortable.Watching this progression is a pain unlike any other.I thought seeing this disease take its toll over the past three years was difficult, but this—this is an entirely new level of torment.
Saying “I hate this disease” is a total understatement. It doesn’t even touch the surface of the grief, frustration, and helplessness that fills every corner of our hearts.
Every breath Bryson takes now is a reminder of how fiercely he is fighting, even when his small body feels fragile beyond words.The color is fading from his cheeks, the strength from his arms and legs, and yet he still holds on, clinging to life in the only way he can.
We are here beside him constantly, counting every moment, watching, holding, whispering words of love that I hope somehow reach him.We offer him comfort, gentle touches, soft blankets, familiar toys, and the presence of family who love him beyond measure.
His world is shrinking as his illness advances, yet our hearts expand with every ounce of love we can pour into him.
There is a profound sadness that comes with this stage of life, a grief so deep it feels like it could swallow us whole.
We see him slip away, yet we must be patient and respectful, allowing his body to make its own choices, honoring his pace, even when it breaks us.Each pause in his breathing, each shallow inhale, reminds us that the end is approaching, yet we cling desperately to the hope that we still have moments together.
The transitions are not just physical but emotional.We have begun to let go of expectations of normalcy, of meals, play, and laughter.
Instead, we focus on presence, comfort, and dignity.
We measure time not in days or hours, but in gentle touches, soft words, and the quiet reassurance that he is loved.
There is an intensity now in caring for Bryson that we have never experienced before.
Everything is amplified: the emotions, the decisions, the pain, and the love.We are learning to navigate this chaos with grace, though often we stumble under its weight.
No guidebook can prepare a parent for watching their child slip further and further away.
