Charlie De Grange, 9, in hospice care due to inoperable brain tumor

Even after starting hospice care at home, 9-year-old Charlie De Grange hasn’t stopped telling his dad something he says nearly every day: He’s not going to die.

He knows what’s happening to him, that his rare brain tumor is inoperable, says his dad, Greg, but Charlie and his family haven’t stopped praying for a miracle.

They’re also facing a likely and heartrending reality. Doctors told the family that Charlie could die very soon.

Charlie was diagnosed in July 2014, just days before his eighth birthday, with diffuse intrinsic pontine glioma. These rare and aggressive brain tumors are found in the brain stem and can’t be removed surgically or with chemotherapy. Around 300 children are diagnosed with DIPG every year. The tumors don’t normally appear in adults.

A donation account online that was being used to help the family pay for medical expenses will soon be used to help the De Granges pay for Charlie’s funeral.

Charlie was put into hospice care in late September.

“He was doing really good and everything was fine and then all of a sudden, within three days, he went downhill to the point where he couldn’t even walk,” Greg De Grange says. “He’s comfortable now and doing better, but he’s slowly getting worse.”

Charlie is now taking steroids and some other drugs to help relieve pain. His tumor has spread into his cerebellum and his dad said that added pressure on the brain stem has caused problems with Charlie’s hearing.

As of Thursday, he could still walk and talk, although both were challenging. “But his spirits are still high,” his dad says. He started using a wheelchair a couple of weeks ago.

His family, now living in Vacaville, is grateful that Charlie has been active and able to live a relatively normal life over the past 15 months. Charlie had some radiation and drug treatment. The De Granges decided against prolonged chemotherapy and instead focused on providing healthy food and natural supplements. The De Granges believe this route helped buy Charlie more time.

“His quality of life has been awesome,” his father says.

Since Charlie’s diagnosis, the community has rallied to help make many of the little boy’s dreams come true. The Make-A-Wish Foundation sent the De Granges to New York City in January because Charlie wanted to see skyscrapers, and over Christmas, St. Anthony of Padua Catholic Church rented the family a condo at Lake Tahoe and paid for snowboarding lessons for Charlie and the De Granges’ three other young children. Charlie also went to Disneyland, Legoland and met Oakland Raiders quarterback and former Fresno State star Derek Carr.

A “Support Charlie De Grange” Facebook page has nearly 3,900 followers, special T-shirts were printed to support Charlie and a Charlie De Grange Savings Fund through YouCaring online has raised nearly $23,700.

“The overwhelming support that we’ve received from everybody has just been amazing,” Greg De Grange says.

Charlie’s dad is trying to focus on the positive that’s come out of the past 15 months.

“We’ve been tighter as a family. … We’ve got closer to Jesus, to God,” he says. “We’ve met new people and become a part of new things in the community.”

The family’s Christian faith remains a comfort and source of strength.

Greg De Grange says his eldest son is a “very strong young man with a lot of faith, and this faith has never left him.”

“He understands what’s happening and he’s scared, as anybody would be, but he really does try to believe he’s going to a better place and that God is good.”

This story was originally published October 8, 2015 at 1:38 PM with the headline "Charlie De Grange, 9, in hospice care due to inoperable brain tumor."