DULUTH, Minn. (AP) — 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 herself.
When Megan was playing 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 that’s 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 died of cancer in 2005 at the age of 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.”
Megan talked to her youth minister about using the church kitchen to make chocolate. She talked to her school’s principal about selling chocolate in the hallway during parent-teacher conferences. She planned to set up a table on Friday afternoons in downtown Moose Lake.
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. The Friday game went into triple-overtime.
Fighting through illness
Megan hadn’t been feeling well for a while, especially not that week. She had 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 on Thursday.
“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 who is 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 St. Paul hospital right away; doctors were waiting for them. A softball-sized mass was in Megan’s liver.
About 10 that night, a doctor walked into Megan’s room and said he was going to be 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 that the tumor had ruptured, or “spilled,” 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. It’s just not very good.”
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,” Nummela said. “And she told her mom that being beautiful is what’s inside of you, not how you look.”
New treatment sought
When a child is seriously ill, her parents become experts in that disease, sometimes learning things even the doctors don’t know. 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 the work. “I am extremely busy; right now I am excruciatingly busy,” Buchsbaum said. “The other doctor who does children with me — we will do whatever it takes to help the kids. That’s our calling.”
Megan and Jodi reached Bloomington. Recently, they met Buchsbaum. A mold was made of Megan’s body so that metal rings could be designed to introduce radiation where it’s needed. Buchsbaum showed them the proton therapy unit. One of only nine such units in the country, it’s housed in a room that’s three stories high and it weighs 90 tons.
Megan made a strong impression on Buchsbaum, 43, a radiation oncologist for about 10 years.
“She’s funny,” Buchsbaum said in a telephone interview recently. “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 or not? She’s got what it takes to get through this, and you can tell that she’s a really tough little cookie.”