Fundraiser planned to help local family battle cancer

WASILLA — “Cancer is not discriminatory.”

That’s what the Toothaker family learned when they received a second cancer diagnosis in the span of a year.

In his career as the Education and Social Services Director at Knik Tribal Council, Kevin Toothaker spends most of his time helping other people, he said. However, the tables turned when doctors diagnosed his wife, Lisa, with esophageal cancer in August, just months after their 21-year-old son Timothy moved to Seattle for Ewing’s Sarcoma treatments. What started as a stomachache, in Lisa’s case, and a “pulled muscle,” in Tim’s, quickly turned into Stage-IV battles that, while not unheard of, blindsided the family.

“Sometimes it’s still like, I don’t believe it,” said Tamara, Tim’s sister.

In fall 2013, Tim was hitting some golf balls at a friend’s house when he got a sharp pain in his upper back, below his neck. The boys laughed it off as a pulled muscle. Tim went back to work in the deli at the Knik Goose Bay Road Three Bears Grocery store.

Weeks passed. Tim was slowly losing function in his left hand, his father said, but it wasn’t until Tim went to the doctor in November with flu-like symptoms that they began to suspect something more serious. Two trips to the emergency room later, doctors still could not confirm what was wrong, but they were about to find out.

On Dec. 17, 2013, barely 24 hours after his second trip to Alaska Native Medical Center in Anchorage, Tim returned to the emergency room.

He was home alone that morning when he bent to pick up a water bottle he had dropped and suddenly collapsed. He was conscious but couldn’t get up, so he crawled to a phone and called his dad at work. Tim’s girlfriend, Eryn MacKenzie made it home before Kevin, so she drove Tim to the hospital in Anchorage.

Emergency room doctors were aware of the situation and started making preparations for Tim as soon as his dad called.

Tim checked into the emergency room around 4 or 5 p.m., his sister said, and by the time the whole family arrived, an MRI had found what doctors called a “mass” in Tim’s neck. After watching him become paralyzed “right before their eyes,” Kevin said, they knew they had to act fast. The neurosurgeon arrived within two hours of Tim’s admittance to the hospital and Tim was in surgery by 8 or 9 p.m., a “pretty quick turn around,” Kevin said.

Two hours later, about 90 percent of a thumb-sized tumor in Tim’s neck had been removed. The remaining 10 percent, however, was fused to his spinal cord and therefore inoperable without risking permanent damage to Tim’s nervous system. The surgery was over, but Tim was still in pain.

“He couldn’t get out of his bed without help, but every time he did he’d be in tears from how bad it was,” Tamara said. “I hated seeing my brother that way.”

Doctors told the family Tim might have stopped breathing if they had waited just 12 more hours for surgery.

The doctors sent the removed piece of tumor out for pathology testing the following day. It was “pins and needles time,” for the family, Kevin said of the wait for test results.

On Christmas Day, Tim and his dad went directly from ANMC to the airport to fly Tim to the University of Washington rehabilitation and physical therapy center in Seattle.

“He literally had to relearn how to walk,” Kevin said.

Seattle would be Tim’s home for another month. Fortunately, Kevin’s job allowed him to take the time off to be with his son, Tamara said. Meanwhile, Tamara and her mother, Lisa, kept their noses to the grindstone in Alaska as best they could.

The women got a call from the doctor in Alaska asking them to come meet with him about the test results on Jan. 7. Doctors said the tumor was cancerous. Ewing’s Sarcoma affects only 300 youth nationwide annually, but Tim was the second in the extended Toothaker family to be diagnosed with the disease, Kevin said. One of Kevin’s cousins, Benji, died of Ewing’s Sarcoma at about the same age as Tim, several years ago.

It was at about this time that the Toothakers started looking deeper into their family’s history with cancer. The results were discouraging. On his mother’s side, his grandmother passed away from liver cancer in the early 1980s, one cousin’s daughter spent a year and a half dealing with kidney cancer, and another cousin’s son had a rare form of blood cancer, though he has since recovered.

As Tim’s tumor began to grow again, the Toothakers decided to go ahead with the chemotherapy in February, and they were not disappointed with the results. In a matter of days, Kevin said, Tim cut his medication needs down from 20 to four pills a day, and by the end of the week, he was off pills completely.

Although minimizing Tim’s pain was a step in the right direction, he still needed to undergo treatment of the cancer. Every month, Kevin and Lisa would alternate spending time with Tim in Seattle, taking off weeks of work at a time to be with him every moment of every day. The schedule was difficult, but they made it work.

In March, Lisa began to complain of backaches and stomach pains. As the mother of a son with cancer, family members reflected that it might have been natural for her to pass off the discomfort as a result of stress or emotional exhaustion. However, things are not always as they seem.

Knowing this, Lisa went to a doctor upon returning to Alaska to get a checkup. He told her to start a “pain journal.” That didn’t appeal much to her for a number of reasons, Kevin said, the biggest one being her desire to focus on her son, rather than herself.

So the parents continued their rotation between Alaska and Seattle as usual, caring for their son. But at the end of July, when Kevin came down to relieve his wife of the duty, he hardly recognized her.

“She was emaciated, it seemed like,” Kevin said. “She just kinda withered up in the matter of a month.”

Lisa had lost 30 pounds in five weeks, her husband said, so he made her promise to follow up with the doctor in Alaska. When she returned, however, she spent her first week home with her mother, Connie Melcher, in the hospital.

“We had to call the ambulance to get her (to the hospital) because she wasn’t feeling right or acting right,” Tamara said of her grandmother, who lives with the family.

At the hospital, Melcher was put on life support in the intensive care unit at Mat-Su Regional Hospital for three or four days, Tamara said, with a bad case of pneumonia.

Lisa made her own doctor’s appointment while her mother was in the hospital. That led to a CT scan and an endoscopy with a chilling result: yet another “mass” was responsible for causing a Toothaker pain. A biopsy found malignancy, and a PET scan confirmed the unthinkable: Lisa had cancer.

Now Tamara was visiting two relatives in the hospital instead of in their bedrooms right down the hall from her at home.

“Every day after I’d visit her (Lisa’s mother) I’d leave crying because I’m like, ‘what else could go wrong?’” Tamara said. “My grandma’s in the hospital, my mom and (brother) have cancer...”

Around this time, Kevin’s parents were in the process of moving to Colorado to “re-retire” and be near his brother, Mark. When they heard about Lisa, however, “they dropped everything,” Kevin said, to help out. They flew to Seattle to visit Tim for a couple days, continued up to Alaska to care for Lisa for a little while, then headed south again in their car, with the rest of their belongings.

But they didn’t go back to Colorado.

“They’ve taken over the care for my son, long story short,” Kevin said. “They’ve made it into a home down there.”

Tim’s grandparents also have made it easier to get out of the house every once and a while. In order to go to a movie or out to eat while in Seattle, the Toothakers used to have to rent a car or ask a friend in the area to give them a ride, which was expensive and sometimes inconvenient. Now, Tim’s grandparents often take him out fishing. At first, his grandparents had to help him reel in any fish larger than his hand — now, he’s fishing on his own, Tamara said.

“That is his therapy, and his cancer doctor prescribed that to him after she learned what we were doing,” Kevin said.

But Tim doesn’t mind if he doesn’t glean anything from his “therapy” sessions.

“He’s not there to catch a fish, just (enjoy) the act of being there and the memories he creates and just feeling the water under him,” Kevin said.

The Toothakers tried to take that philosophy with them when moose hunting season rolled around. As much as it pained him to leave Lisa at home, Kevin, his brother Kelly, Tamara and Tamara’s boyfriend, Scott Breuer, set off into Hatcher Pass in search of a moose.

They didn’t find one, but the trip was nostalgic, Kevin said.

“There’s something therapeutic about being out in the country in Alaska and trying to figure out how you’re gonna get through the next mud hole on your four-wheeler,” he said.

Off the trail, financial and emotional struggles emerged. Kevin and Tamara said that when people ask them how they keep going, the question puzzles them.

“We’re not doing anything anybody else wouldn’t do in the same situation,” Kevin said. “The circumstances create the person and you just gotta live up to it.”

Believing that "everything happens for a reason," even an unknown reason, also helps, Kevin said.

“I think the Creator has everything going for us, he’s just giving us the tools and we have to recognize it,” Kevin said. “I think one of the greatest things we’ve got is a strong family.”

That strong family is made up of more than blood relations. Breuer has been Tim’s best friend since elementary school, so he was “tickled” when Scott and Tamara got together. But his role is a little bit bigger than that of boyfriend and hunting companion.

“When Dad’s gone, he’s pretty much the man of the house,” Tamara said.

Kevin’s friend and former co-worker, Kizzi Davis, is organizing the Double Miracle Fundraiser for the family from 2 to 6:30 p.m., Oct. 11 at Wasilla Middle School. Tickets for the spaghetti feed and live entertainment can be purchased at Knik Tribal Council, 951 E. Bogard Rd. General donations or those for the silent auction can also be brought to the council.

Davis also has been helpful because Kevin admits he’s not much of a planner. He said he hopes they will be able to host more fundraisers in the future while waiting for a double miracle.

To get involved with the fundraiser, contact Kizzi Davis at 232-2000 or kizzi@mtaonline.net.

Contact Caitlin Skvorc at 352-2266 or caitlin.skvorc@frontiersman.com.