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“Make the most of every moment”: Neil’s story

“Looking for guidance” — that’s how 19-year-old Neil Fachon began the email. He was in his sophomore year at Northeastern University, and he’d just been diagnosed with terminal brain cancer. He was reaching out to the college chaplain for help with the journey ahead.

As Neil’s health declined, he and chaplain Harrison Blum talked about taking things moment by moment. They talked about the importance of “being” rather than “doing.” They talked about what it meant to live life fully, even in the context of a grave illness.

“I was profoundly touched by Neil’s ability to move toward rather than away from life at a time when his body itself was moving out of his control,” said Harrison.

At one point, reflecting on how his perspective had changed since his diagnosis, Neil wrote to Harrison that he hadn’t found all the answers just yet — “that wouldn’t be fun,” he joked — but he’d discovered something else.

“What I did find is… a way of living that makes the most of every moment,” Neil said, “no matter the circumstances.”

> Learn how to get started with hospice care.

“He was telling us, ‘It’s OK’”

Humor, hope and kindness — these were Neil to a T. In high school, inspired by the book The Jester Has Lost His Jingle, he’d embraced a personal mission of optimism. As a student mentor, he’d coaxed even the most reserved kids out of their shells. He treated other people with such kindness, one of his college friends initially assumed it was a prank, “because I couldn’t believe someone could be that nice.”

And when he was diagnosed with diffuse intrinsic pontine glioma (DIPG) — a rare, aggressive, inoperable brain cancer — he remained determined and upbeat, despite the devastating course of his illness. So did his family. Over the next several months, the Fachons moved to Houston so Neil could take part in a clinical trial. The family returned home to Rhode Island in June, and by December, Neil needed round-the-clock care, which parents Wendy and Dean handled in shifts. Neil’s older sister, Evie, who was also attending Northeastern, left college on weekends to be by his side.

By February 2017, Neil had outlived his prognosis by more than six months. But he had lost the ability to speak, smile and survive without 24/7 medical support. He was back in the hospital for a third time, and unable to return home.

Wendy and Dean knew that hospice would offer crucial medical, emotional and spiritual care for the final chapter of their son’s life. But amid the grief and shock of the past few months, they were having a hard time with the decision.

It was Neil, ever the philosopher, who guided them.

“Neil pointed out the window at the sky. He was telling us, ‘It’s OK. It’s time for me to go,’” says Wendy.

> Related: “Saying yes to pediatric hospice changed our lives”: Rogan’s story

“We were there to have him live a little bit more”

There is a saying in end-of-life care: Hospice isn’t about death. It’s about life. That perspective was at the heart of Neil’s own philosophy for making the most of every moment. It shined through in how his family honored his final days.

“We wanted to make Neil’s last couple weeks the best that they could be for him,” says Wendy.

The Fachons brought Neil to the HopeHealth Hulitar Hospice Center, where he could have hospital-grade care in a peaceful setting, with minimal intrusions. There, they knew Neil’s every medical need would be taken care of. So would other needs: A reiki practitioner came by, and a therapy dog. They were offered grief support and spiritual counseling.

They also had the chance to simply spend quality time together as a family.

“The compassionate nursing staff took wonderful care in keeping Neil clean and comfortable. This took a tremendous burden off of us, so that we could just sit with him without constantly worrying about his physical comfort,” says Wendy.

Wendy, Dean and Evie hung a quilted banner of a rising phoenix in Neil’s room, sewn by his high school chemistry teacher. An orchid bloomed beneath the window. They tacked photos and gifts from friends to the bulletin board — an Army boonie hat, dog tags, a tennis shirt. Books, food baskets and rosaries dotted the room’s surfaces.

When Harrison, Neil’s chaplain pen pal, came to visit, he was struck by the setting. “I so appreciated the warmth, the love in that room, even amidst the hard emotions that were also there,” he said.

Wendy compares Neil’s time in hospice to a living wake: “Individuals and groups of visitors came each day to say goodbye. They brought smiles, laughter, prayers, artwork, stories, music, flowers, photos and mementos,” she says. “If we had been at home, it wouldn’t have been as easy to have all those visitors.”

“We were there to have Neil live a little bit more before he died,” she says. “Hospice made that possible.”

> Checklist: What to look for in a hospice provider

“It’s all about hope”

In the months after Neil’s death, Wendy would often don his favorite sweatpants and gray hoodie, and write in her journal to work through the events of the past year. At a certain point, she turned to happier memories from Neil’s childhood, which developed into a collection of stories about his teen years, “The Difference Maker.” Eventually, she wrote about her grief for the 2021 compilation “Shining a Light on Grief: Volume Two,” edited by Susan Lataille.

“Everyone grieves in their own way,” says Wendy. The experience of writing about her own experience was like “peeling the layers of an onion off myself. It was not easy,” she says. But she wanted to do it, and she felt that Neil would want her to do it too.

“I wanted to share what I’ve learned about grief. How you’ve got to walk through that pain and get to the other side. It’s not easy. But you can do it,” Wendy says. “We need hope, right? It’s all about hope.”

Neil would surely agree. Today, Wendy senses him everywhere.

“I wake up every morning: ‘God, where do you want me today? Neil, where do you want me today?’” Wendy says. “I hear him. He’s funny. He’s there helping me, steering me, guiding me as I continue on this journey.”

He discovered how to make the most of life during the time he was given. And now he’s helping others do the same.

For hospice information and support, contact us at (844) 671-HOPE or

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