From the outside looking in, Adler Carris is just like any other 4-year-old boy.
He plays video games on the computer and loves superheroes. Cartoons, Legos and naptime are part of his daily activities. When his mom, Elizabeth Carris, offers him a blue sucker, his eyes light up and he giggles in delight.
But to his doctors, Adler is “an enigma wrapped in a puzzle wrapped in a riddle.”
They don’t know why he has hydrocephalus, a condition where there is too much liquid on the brain. There’s no family history and no cause that they’ve been able to determine, despite dozens of tests.
For eight months, his doctors also didn’t know why Adler felt constant pain in his buttocks, which would often be so severe that he couldn’t sit or lay down.
Doctors at Lurie Children’s Hospital in Chicago saw an unusual thickening at the base of his spine in an MRI in June. A biopsy revealed the cause of the pain. It was a diagnosis that Elizabeth and her husband, Aaron, never thought they would hear: brain cancer.
Specifically, Adler has grade two pilomyxoid astrocytoma, a pediatric brain cancer also known as PMA. He has one tumor in his brain and the cancer spread to inside his spinal column, where he has two tumors — one at the nape of his neck and one at the base of his spine.
The treatment for PMA will be complicated.
The tumors are inoperable because of where they are. Adler will begin two types of chemotherapy at Memorial Hospital in South Bend on Thursday, July 10.
“He will likely be like any other cancer patient,” Elizabeth said. He’ll receive weekly treatments at Memorial through a port on his chest.
In addition to their son’s health, Elizabeth and Aaron Carris are concerned about hospital bills and expenses. Even though Obamacare
removed caps on health insurance policies, they aren’t sure how much their insurance will cover.
And every time Elizabeth and Aaron have to take off work to take Adler for chemotherapy treatments, they will lose that pay from their jobs.
To help with expenses, family friend Brandi Graves started a GoFundMe page.
As of 2 p.m. Tuesday, the page had raised $3,000 for the Carris family.
Other fundraisers are in the planning stages, including a plan to sell rubber bracelets in support of Adler. The bracelets will be grey for brain cancer and say “Adler Bear” and “Bold As Love,” which references a song by The Jimi Hendrix Experience that Elizabeth has chosen for Adler’s theme song.
“He truly is ’bold as love,’” Elizabeth said.
Adler will likely lose weight. His mop of curly blond hair will probably fall out. The Carris family will have to be careful about infections while Adler is undergoing chemotherapy, which will deplete his immune system.
But if all goes well, the tumors will shrink. There’s a 40 to 50 percent chance that the chemo will work. The Carrises will take him to Lurie in six to eight weeks to see if there’s a change and then determine how to continue treatment. If a year of chemotherapy does nothing to the tumors, the doctors will consider radiation.
“The tumors will stay,” Elizabeth said. “But the doctors believe that the pain will go away if they shrink.”
Right now, Adler’s pain is being managed by a palliative care team, which normally manages pain for hospice patients. Adler has a Fentanyl patch that gets changed every three days, and he takes liquid morphine for breakthrough pain. The pain has been noticeably better with this treatment plan.
“It feels like we’ve been in a pain prison,” Elizabeth said. “It was hard to witness, it was hard to be a part of. And as a mom, you’re just helpless. There’s nothing I could do but just hold him. We’re just ready to ease the pain.”
Elizabeth and Aaron have found strength in each other and in their son. After they spent 14 days straight together in a hospital room at Lurie, they came home and spent a weekend alone together to restore a sense of normalcy.
“Adler is stronger than my husband and I. I don’t know how he gets it. He is a light in the dark and he has not dimmed,” Elizabeth said. “As long as he says he’s going to be okay, I believe it.”
Adler has faith that he’s going to be okay.
“I believe Jesus is going to pray with me,” Adler said with a laugh. “He is. I know he is.”