Her son Hunter’s significant weight loss and debilitating headaches were signs of concern for Amy High. After numerous visits to emergency rooms and doctors’ offices, and an incorrect diagnosis of migraine headaches, an MRI revealed the cause of these troubling symptoms: medulloblastoma — a brain tumor — diagnosed in June 2013.
Immediately after the diagnosis, 14-year-old Hunter was sent by ambulance to the children’s hospital nearest the family’s home in Nekoosa, Wisconsin. There, surgery was performed to remove the tumor.
Doctors told Amy and her husband Eli that the surgery had gone well, but that the protocol for medulloblastoma is to treat the entire brain and spine with radiation. This is the case, even if no tumor is present on an MRI post-surgery.
“Hunter’s oncologist said to us, ‘If my child had the same diagnosis as Hunter, I would send him to have proton therapy,’” said Amy. “She said there would be travel involved. We could have traditional [photon] radiation closer to home. But when it’s your child — our view was that we didn’t have any other choice than to do what was absolutely best.
“And if she felt that was absolutely best, then we would do whatever we had to do.”
Amy, Hunter and Amy’s mother traveled to the CDH Proton Center, in the Chicago suburb of Warrenville, Illinois — about a four-hour drive from Nekoosa — for six weeks of proton therapy treatment.
“There’s nothing like a teenage boy having to share a room with his mom,” said Amy with a laugh. “But we did gain a lot of closeness from that whole experience. Someone donated Chicago Cubs tickets, so I got to take Hunter to see his first Cubs baseball game. We got to see a lot of the sights of Chicago, and we spent time on the beaches of Lake Michigan together. I tried to get him out every day and make the best of a not-so-great situation.”
Amy and Hunter found the staff at the proton center friendly and welcoming.
“They make you feel like family and look out for you — especially being far away from home,” said Amy. “The doctors were incredible to work with. And Diane, the woman at the front desk, was very helpful. Anything we needed, she would work to help us. On the days that Hunter was feeling down, she would talk with him and encourage him.”
Diane keeps in touch with the family to see how Hunter is doing, Amy added.
Today, Hunter is back home and receiving chemotherapy. The ninth grader attends school when he feels up to it, says Amy, sometimes going for a half day, then getting tutoring and completing online coursework at home.
“It’s been difficult going through this,” she says. “But knowing where we could be, we appreciate where we are. We try to make the best of it.” Amy and Eli also have two daughters, ages 12 and 7.
Hunter, an athlete, has had to give up playing football and basketball, and running track — at least for the time being. “Now he’s into video games and music,” says Amy. “But that’s okay for now.”
Amy credits the organization Compass to Care with helping them move to lodging in Chicago that was closer to the proton therapy center, which was easier for Hunter to cope with physically. “If it wasn’t for them, financially we could not have done this,” says Amy.