Meet Devin,
He is a courageous, tender-hearted 14-year-old boy who has been fighting Osteosarcoma for 262 days, 10 hours, and six minutes. For every one of those minutes, he has shown more bravery, grace, and quiet strength than most people show in a lifetime. Over these last few days, we have begun to face a truth no parent should ever have to accept: we are nearing the end of his journey. Our boy isn’t coming home.
Let me take you back to the beginning—well, the beginning-ish. Devin was a happy, healthy 13-year-old getting ready to enjoy Spring Break, excited in that effortless way kids are when the world feels full of promise. Around that time, he mentioned some knee pain. Nothing alarming, nothing that set off immediate panic—just the kind of ache you assume comes from growing, running, living life. We took him to prompt care to get it checked out, just to be safe.
After some imaging and waiting, the doctor came back with a sentence that nudged the first domino: “The images are too fuzzy. We need you to head to the ER.” We didn’t know it then, but our lives had already changed.
In the ER, after more tests and more waiting, we were told Devin had a mass on his tibia. Those words didn’t make sense at first. They didn’t feel real. They floated in the air, heavy and impossible.
From Champaign to Chicago we went—straight to Northwestern Medical Center—holding onto hope, fear, and each other. When we arrived, we met with a doctor who explained that the only way to know what the mass truly was would be to perform a biopsy. The wait for answers felt like years, stretching into an eternity of what-ifs.
And then the call came. Devin had Osteosarcoma—bone cancer.
In that moment, everything shifted. The world narrowed to hospital rooms, treatment plans, scans, and prayers whispered in hallways. But Devin… Devin stayed Devin. Kind. Brave. Gentle. Stronger than anyone should ever have to be.
In the months that followed, Devin pushed on with a strength that still leaves us in awe. He faced two rounds of chemotherapy that ultimately failed to shrink his tumor. He endured countless appointments, endless blood draws, and more hospital stays than any child should ever experience—nearly every week brought a new fever, a new infection, or a new complication. And yet, through every setback, he stayed steady. He stayed gentle. He stayed Devin. Even on the hardest days, he found small reasons to smile, to reassure us, and to hold onto hope.
Now, let’s fast forward to November 27th—Thanksgiving. That evening, as he was getting ready for bed, Devin told us he felt short of breath when he walked. We asked how bad it was, and he shrugged it off with that quiet, brave dismissal he always used: “Not bad, just when I’m up walking around.” We wanted to believe him. We wanted to breathe easy. But something in our hearts knew otherwise.
After a long, anxious night, we rushed to his bedside the next morning. The moment we saw him, we knew. He wasn’t just winded. He was struggling to breathe.
His oxygen levels were at 84. His heart rate was 142. Fear hit us like a physical force.
We called an ambulance and headed back to Champaign, already knowing we’d soon be on our way to Lurie’s again. What we didn’t know—what no one could have prepared us for—was just how urgent the situation truly was. Once evaluated, we learned that Devin was quickly accumulating fluid around his lungs. He needed to be airlifted immediately.
When we arrived at Lurie Children’s Hospital, a room was already waiting for us in the emergency department. We moved through the motions—more imaging, more exams, more whispered prayers—while the minutes stretched into hours. Every test felt like a lifetime.
Eventually, Devin was admitted to the 16th floor, the PICU. Around midnight on November 29th, he underwent an ultrasound of his lungs. The results were immediate and terrifying: he needed a chest tube placed on his left side. By 3 a.m., he needed a second tube on the right.
Even then, even with machines whirring around us, we clung to hope. We were told the breathing issues were most likely caused by an infection—something treatable, something fixable. We held onto those words with everything we had.
As we waited for the viral, bacterial, and fungal cultures and tests to come back, Devin was transferred to the 17th floor. The solid tumor floor. A place we knew too well. A place no child should ever have to return to.
The hours slowly turned into days—days filled with repeated chest X-rays, constant blood tests, and restless nights spent listening to machines hum in the dark. We lived in a cycle of waiting and worrying, hoping for even the smallest sign of improvement. But on Wednesday, December 3rd, everything began to shift.
Devin started becoming unusually sleepy, slipping in and out of awareness. He wasn’t himself. He wouldn’t easily wake, and when he did, he seemed restless, agitated—so unlike the calm, gentle boy we know. As his mental state declined, his physical stability fell with it.
Soon, we were rushed back down to the PICU. His carbon dioxide levels had spiked to 80, far too high. He needed support immediately, and the team placed him on a BiPap machine to help him breathe.
The doctors told us he needed a CT scan—and he needed it urgently. But there was a problem: he couldn’t tolerate lying flat. Every attempt caused his breathing to spiral. So we waited again, caught in another agonizing limbo. He wasn’t stable enough for the scan, but without it, we had no clear answers. The waiting felt impossible.
One by one, the infectious disease tests came back. Negative. Every culture, every panel, every possibility we hoped might offer a fixable solution—they were all negative. All except one test.
The test for cancer cells.
Then came the news we had prayed we would never hear. The cancer had reached his lungs.
After two long days of trying to stabilize him, he was finally able to lie flat long enough to complete the CT. The results were devastating. The cancer had ravaged his lungs so extensively that the doctors couldn’t distinguish the metastases from areas that looked like possible infection. And then came another blow: the scans showed the cancer had reached his skull as well.
Which brings us to yesterday—a day no parent should ever have to face.
Yesterday was the day we had to make the decision no one should ever have to make: whether to intubate our child if his breathing worsened. After meeting with oncology, infectious disease, palliative care, and the PICU team, we had to confront the reality in front of us. Intubation would not save him. Instead, it would almost certainly put him through massive trauma only to prolong suffering and force us, eventually, to withdraw care. Giving that kind of pain to our son—our sweet, loving boy—was not something we could choose.
So, we made the hardest decision of our lives: if the moment comes, we will not put him through intubation.
And now, here we are.
At the end.
In the waiting.
In the not knowing.
We are living the worst days a parent can ever experience—watching the child you love more than anything slowly slip away, holding onto every breath, every heartbeat, every moment, while trying to be strong enough to let him go gently.
During these painful moments, we’ve also had to begin discussing final arrangements—conversations no parent should ever have to navigate, yet ones we feel are important to approach with honesty, love, and inclusion. We have involved his twin brother, Brayden, in these discussions, giving him space to express what he needs to say goodbye in a way that feels meaningful and healing.
Brayden has been very clear about one thing: he needs a viewing. He wants the chance to hold his brother’s hand one last time, to see him at peace, and to say a final goodbye in a way that brings him closure. As his parents, we want to honor that need. We want to give both of our boys the gentlest ending we can.
This is where we humbly ask for your help.
Not out of desperation, but out of love—for Devin, for Brayden, and for our family as we walk through the unimaginable.
Every like, every share, every donation—no matter the size—brings us closer to giving Brayden the chance to say goodbye the way he needs to. Your support helps us create the peaceful, loving farewell our sweet boy deserves.
Thank you for walking beside us, for holding space for Devin, and for helping us honor him with tenderness and dignity.
Organizer
