Jim Kenyon: A Time Bomb in His Head

Five-year-old Robyn Perkins was dressed up as a princess, playing with her 3-year-old sister, Alexandra, in the front yard of the mobile home that her parents rent in Tunbridge when I arrived last Thursday morning.

Robyn, who starts kindergarten in a couple of weeks, informed me that the costume she was wearing was, well, just that, a costume. When she grows up, Robyn said, “I want to be a doctor.”

And her younger sister’s career plans?

“She wants to be a nurse,” said her mother, Emily. Both girls, said Emily, “want to help their daddy get better.”

Michael Perkins, 30, recently learned that he has an inoperable brain tumor. As scary as it sounds, Perkins is accustomed to hearing that the odds are not in his favor.

He was 21 when neurosurgeons at Dartmouth-Hitchcock Medical Center removed a malignant tumor, the size of a lime, from his brain. According to the National Brain Tumor Society’s website, Perkins’ glioblastoma multiforme, or GBM for short, is the “most common and deadliest of malignant primary brain tumors in adults.” The cause is unknown.

The median length of survival: 15 months. Less than 5 percent of people diagnosed with GBM make it past five years.

But Perkins not only survived, you might even say he thrived. After his first surgery nine years ago, he returned to working as a roofer, married Emily, and became a dad.

“Michael is a miracle,” said his mother-in-law, Peggy Ainsworth, who is on the Selectboard in Royalton.

But that tumor keeps coming back. Radiation therapy and chemotherapy can’t quash it. Twice in the last five years, DHMC neurosurgeons have gone back inside his head to remove as much of the tumor as they safely can.

Now the tumor has infiltrated a region of his brain where surgery isn’t possible. Perkins will soon start a new regimen of chemotherapy, but treatment options are running out. “We’ve always known it was a time bomb, but it’s hard when it’s ticking,” said Ainsworth.

Medicaid, the government health insurance program, covers most of his health care costs. However, there’s still food, rent, clothing and car expenses for the family of four.

The onset of grand mal seizures, which cause him to lose consciousness, forced Perkins to stop working three years ago. He gets a monthly Social Security disability check for $865. “And our rent is $750,” he said. “We have the disability income, but it’s not enough to live on.”

Emily, 26, was a waitress at the Ninety Nine restaurant in West Lebanon until she had to take a leave in February. With her husband prone to losing consciousness in the seizures, she felt uncomfortable leaving him alone to watch Robyn and Alexandra.

Financially, they got by for a while. After Perkins’ surgery last August, the Ninety Nine chain gave them $2,000 from its employee relief fund.

Emily’s mom, Peggy, and her stepfather, David Ainsworth, a former state legislator, help out as much as they can. On their frequent visits to their grandparents’ dairy farm in South Royalton, Robyn and Alexandra stroll through the large vegetable garden with baskets in hand. “They eat tomatoes like they’re apples,” said their dad, taking pride in his daughters’ good eating habits.

To help pay for groceries, the Perkins family signed up for food stamps. Still, making ends meet is a constant struggle.

It’s a struggle that hasn’t gone unnoticed. In South Royalton, Alison Gravel and Raelene Lemery, who runs the Red Door thrift shop, are planning a community dinner on the family’s behalf in late September. The two women have put up collection jars around town. Donations can also be sent to the Michael and Emily Perkins Benefit Savings Account at Randolph National Bank.

“The family is just having a real hard time, and the community is pulling together to help,” said Lemery.

Michael and Emily and their two girls spend a lot of time driving the 30 miles between Tunbridge and DHMC’s Norris Cotton Cancer Center in Lebanon. Recognizing that gas was a big weekly expense for the family, Jim Fisk, owner of the Midway Station in Sharon, offered Perkins a charge account. Pay me when you can, he said.

Fisk’s gesture, along with the couple of hundred dollars that have been dropped into the collection jars, “makes life a little better,” said Emily.

At first, her husband was lukewarm about accepting the charity. Perkins, who grew up in Sharon, left home at 17 and has been on his own since. He couldn’t imagine a time when he would need outside help to support his family. In difficult times, he could hunt and fish to put food on their table.

When he’s feeling up to it this summer, he takes Emily and the girls to the White River, where they fish for rainbow trout and walleye.

On the days he’s not feeling so well, the girls are quick to fetch him a blanket while he rests on the living room couch. “Do we need to take your temperature?” they ask.

On good days and bad, Perkins focuses on the short term. Right now, he’s looking forward to watching Robyn hop aboard the school bus on her first day of school. In mid-September, he’ll take the girls to the Tunbridge World’s Fair, where he’ll stand off to the midway’s side, watching Robyn and Alexandra on their favorite ride, the spinning tea cup.

“I’ve got a lot to live for,” he told me. “That’s what keeps me fighting.”

Every princess deserves a miracle.

Jim Kenyon can be reached at Jim.Kenyon@valley.net