St. George • By the time doctors discovered Mac Rogers had brain cancer, he was already a leukemia survivor. Mac was three years old.
He's seven now, and his prognosis is uncertain. But 10 months ago, parents Brittny and Jeremy Rogers of Hurricane made a momentous decision: They would take him off chemotherapy, at least for a while, and give him a chance at living without its devastating side effects.
And Brittny decided Mac's story was worth sharing.
She's written a children's book called "This Is Hard But You Can Do It," featuring Mac as the main character. Recently she found an illustrator for the project, then put it on Kickstarter to raise money for the book and audiobook. Only six hours later, it was fully funded.
"I hope that kids and families will be able to take the words that we've learned over lots and lots of years of doing hard things and just be able to be more hopeful in dark times," Brittny said.
Battling leukemia
Brittny and Jeremy first noticed Mac was bruising easily when he was about 8 months old.
The bruises showed up first around his eyes.
The Rogers took Mac to see a doctor who said their son was fine; perhaps he was just bumping into things.
But the Rogers weren't convinced. Mac wasn't an active kid, Jeremy said.
Several weeks went by, and so did several more doctor's appointments as Mac only got sicker. By then, he had a double ear infection and a double eye infection. Doctors told the Rogers it was all viral.
Finally, during a weekend that a normally-hungry Mac wasn't eating much, the Rogers took their son to a pediatrician's office, where medical staff ran blood work. At the time they were living in Colorado.
That's when a doctor came into the room and said, "You need to get to Children's Hospital Colorado." Mac, they would eventually learn, had acute myeloid leukemia.
Months of cancer treatments and blood transfusions followed, along with surgeries and nights sleeping on the floor of Mac's hospital room. When Mac went into remission, the Rogers thought the worst was over.
Difficult decisions
Following Mac's leukemia ordeal, the Rogers moved to the St. George area in 2016. They had been there several months when they took a trip to Kansas to visit family.
It was there that Mac, then three, became dehydrated and began sleeping much more than usual. Doctors at an emergency room told the Rogers that Mac had a virus, but then Brittny noticed Mac could only lift one half of his mouth in a smile. He also began saying he was cold when it was hot outside and asking to put his shoes on when they were already on.
The Rogers took Mac back to Children's Hospital Colorado, where an MRI revealed high grade gliomas — fast-growing brain tumors which spread quickly, making them difficult to treat. Outlook for the disease is generally poor, according to Cincinnati Children's Hospital Medical Center.
"The leukemia thing was life-altering," Jeremy said. "You're thinking, 'Okay, we've been through something pretty difficult.' ... (But) this is completely different, completely new."
Mac received an external drain that hung on the outside of his head to relieve pressure on his brain, which the Rogers monitored carefully so Mac wouldn't accidentally yank it out. Surgery removed all of one tumor closer to the surface, while another, deeper tumor required a 12-hour operation which put Mac's ability to eat and walk at risk.
He came out of that surgery, though, asking for pepperonis and garlic bread. After his surgeries came months of intense physical and occupational therapy, and his chemotherapy treatments resumed in the form of shots, pills and a port.
The Rogers said Mac took a chemotherapy pill every day and night for over three years, which they put in cut-up Pop-Tarts to help Mac swallow them.
Brittny said last summer is when the side-effects of Mac's chemotherapy were the worst she's ever seen them. Mac felt terrible all the time, she said, and couldn't go anywhere, while Jeffrey said Mac couldn't be in the sun at all.
"He had just no quality of life," Brittny said. "Every day was such a struggle for him and he just didn't feel good ever."
The Rogers knew the stakes involved in taking Mac off his chemotherapy. But ten months ago, after intensive prayer and consideration, they decided to do it, at least for now.
"(He) can't keep living like this," Jeremy said. "There's no quality of life."
The Rogers said at this point, they don't know what to expect medically. Mac has MRIs every three months, and since they haven't ruled out the possibility of resuming chemotherapy treatments at some point, doctors have told them to enjoy this break.
"We've altered our life in a way where just everything is just about us and our family," Jeremy said. "We spend as much time with him as we can."
Brittny said it's been a blessing to see Mac play in the sun with his brothers for the first time. Mac has a lot of quiet strength, she said, and has been asked to do so many hard things.
"And he does it with a lot of grace and understanding... He just kind of accepted that this is what he had to do," she said.
Sharing hope and courage
Brittny said Jeremy first had the idea of a children's book years ago, but it wasn't until last summer, when Mac was particularly sick from chemotherapy, that Brittny realized she didn't want to write it without Mac.
She got to work and the words came easily. "This Is Hard But You Can Do It" tells the story of Mac being nervous the night before a surgery, and how his mom encouraged him with words of hope, positivity and courage.
Brittny said her biggest goal for the book is to share it with families, and already she's seen people connect with the story and draw strength from Mac's experiences.
She's received messages from people facing everything from a root canal to donating blood who thought of Mac and realized, "This is hard, but I can do it."
Brittny also said the book has been an opportunity to turn all of her family's hardships into something good they can give to those who have supported and loved them.
“It’s meant to just really encourage kids (and show them) that they can do hard things and that they’re loved,” she said.
