Megan Wegge, 12, donated hair to honor a friend killed by cancer. Now it's Megan who faces a life-and-death battle.
DULUTH -- When Megan Wegge twice donated her long, blond hair to "Locks of Love," she didn't know that when she was 12 she would lose all of her own hair to the effects of chemotherapy.
When she laid the groundwork for her own business, "Chocolate for Children," to raise money for pediatric cancer research, Megan didn't know she would be diagnosed with a rare form of cancer.
When Megan played in the state tournament with her Moose Lake U12B hockey team in March, she had no idea that by the end of May she and her mom would be temporary residents of Bloomington, Ind., preparing for a form of radiation treatment available in only nine places in the country.
Megan, mom Jodi, dad Dan, older sister Lindsey and her triplet brother and sister Nicholas and Brooke moved to Moose Lake less than five years ago from Arlington, Minn. Before that, they lived in Cummings, N.D., where they were close friends of Jim and Denise Murphy and their son, Johnny. When Johnny lost his battle with cancer in 2005 at age 11, it had a profound effect on the Wegge children, especially Megan.
"She had wanted to do something in honor of Johnny, so she's donated her hair to Locks of Love two times," Jodi Wegge said from a hotel room in Bloomington, where she and Megan are beginning a seven-week stay. "She came up with an idea to make chocolates, and she named her little company Chocolate for Children."
Life went on, and for Megan, a lot of that revolved around hockey. She and friend Asia Gobel were on that U12B hockey team that competed in Grand Rapids on March 18-20.
Megan hadn't been feeling well for a while, especially that week. She stayed home from school every day, but her mother told her she would have to go to school on Thursday or not compete in the state tourney. She went to school.
"Come to find out here she's skating at the state tournament with this ruptured malignant tumor," Jodi Wegge said. "Never complained. Gave it her all. Pretty amazing."
Megan had been sick off and on for weeks. Tests administered during clinic and emergency room visits revealed nothing. "And she just kept getting worse, and I felt like I was just watching her wither away in our bed," Jodi Wegge said. She called her husband, a contractor building houses in North Dakota.
"I said, 'Dan, something's not right.' He said, 'Well, take her back in.'"
The clinic scheduled a CAT scan for the morning of April 14. An hour after they got home, Jodi got a call. They should go to Children's Hospital in St. Paul; doctors were waiting. A softball-sized mass was in Megan's liver.
About 10 that night, a doctor walked into Megan's room and said he was her primary oncologist. "And that was the first we'd heard the cancer word," Jodi Wegge said.
The cancer was diagnosed as undifferentiated embryonal sarcoma of the liver -- "undifferentiated" meaning highly malignant. The good news was that doctors removed all of the tumor, along with half of Megan's liver. The bad news was the tumor had ruptured into her abdomen. Because of that, "she's a lot higher risk of a relapse or this cancer starting somewhere else," Jodi Wegge said. "Because there's so few people [with this form of cancer], there isn't any clear data on how to treat it."
Chemotherapy and radiation were prescribed. Megan's hair started to fall out, and on May 10 Jodi shaved Megan's head. Family friend Cathleen Nummela said losing her hair didn't faze Megan.
"She went to the school and talked about how everybody tells her she's beautiful even without hair."
When a child is seriously ill, parents become experts in that disease. Jodi Wegge, concerned about the effects of radiation, read about something called proton therapy.
She and Megan's radiation oncologist, Dr. Patsa Sullivan, started calling proton therapy centers. Houston; Loma Linda, Calif.; Boston. They couldn't fit Megan in soon enough. On the evening of May 20, Sullivan reached Dr. Jeff Buchsbaum of the Indiana University Proton Therapy Center by cell phone. Buchsbaum had the day off and was shopping with in-laws. In a telephone interview, he said it was the fourth referral he'd gotten that day.
"We are committed to not making a child wait," Buchsbaum said. "We're committed to not making anybody wait. I told Dr. Sullivan, just send her, I'll figure it out."
One of the IU center's focuses is treating children, and Buchsbaum is passionate about it. "We will do whatever it takes. ... That's our calling."
A mold was made of Megan's body so metal rings could be designed to introduce radiation where it's needed. Buchsbaum showed them the 90-ton proton therapy unit, housed in a room three stories high.
Megan has a good sense of humor, Buchsbaum said. "She has a very good smile. She is, as are most children who have these kinds of problems, she is wise beyond her years. I think Megan is a very strong and very sweet girl. And I think that she's got the right constitution to survive this and get through it.
"The question is going to be ultimately, is it going to work?"
The targeted beams will spare many of Megan's organs, but her right kidney won't survive. So mother and daughter made the 90-minute drive to Riley Hospital for Children in Indianapolis for a test to find out how much of the load that kidney bears. If it's more than 50 percent, some kind of kidney surgery will be needed before radiation can begin. Riley is also where Megan will continue to receive chemotherapy while she's in Indiana.
At home, relatives and family friends are taking turns staying with the children, because Dan Wegge still has to spend most of his time in North Dakota.
A benefit for Megan and her family is planned for June 12 at Doc's Sports Bar in Sturgeon Lake, with a kids' carnival, spaghetti dinner, silent auctions and raffles every half-hour.