'Can we have a party?': Terminally ill at 19, Morgan Long wants to celebrate her life now

COTTON -- Morgan Long collects Converse tennis shoes, hats and anything butterfly-related -- down to the "Believe" butterfly tattoo on her foot. "Whenever you see a butterfly, something good is going to happen," said Morgan, quoting her grandmother.

Lauren Magnuson of Duluth (left) kids Morgan Long about who did the better job on her nails on Thursday, her or Morgan's uncle Jim Pascoe. Magnuson is one of Long's best friends. Long is in hospice care at her home because she is terminally ill with brain cancer. Bob King /

COTTON - Morgan Long collects Converse tennis shoes, hats and anything butterfly-related - down to the "Believe" butterfly tattoo on her foot.

"Whenever you see a butterfly, something good is going to happen," said Morgan, quoting her grandmother.

So butterflies will play a major role Friday at a celebration of life event for the 19-year-old Denfeld High School graduate, who was told about a month ago by doctors at the Mayo Clinic that there was nothing more they could do to stop the brain cancer that was first diagnosed when she was 17 months old.

A highlight of the event at the AAD Shrine in Hermantown will occur when each family in attendance is handed a box. They'll walk out into the parking lot, face away from the highway and toward the woods, and release monarch butterflies.

It will be meaningful, Morgan said, because monarch butterflies are endangered.


On her smartphone, Morgan played an excerpt from one of the songs she's considering for the event, "Something Beautiful" by British singer-songwriter Jacob Banks.

"Thank God you're still here, and that's something beautiful," the lyrics read, in part.

The lyrics are meaningful to her and will be to everyone who knows her, said her mom, Molly Long.

"We never thought she'd be 19 years old, still here and releasing butterflies before she goes to heaven," said Molly, who participated in the conversation in the home overlooking Rose Lake that the family moved into three weeks ago.

With the form of ependymoma brain tumor Morgan was diagnosed with at 17 months, the family was told she likely wouldn't live to see her fifth birthday, Molly said.

It's a rare form of cancer in children, said Dr. Amulya A. Nageswara Rao, who specializes in pediatric hematology and oncology at the Mayo Clinic and has been Morgan's primary doctor for the past five years.

With a fighting spirit and relentlessly optimistic outlook, Morgan has beaten that long enough to graduate with her high school class and earn her driver's license, although it came at a price: numerous serious operations over the course of her young life.

"She's a fighter for sure," said one of Morgan's best friends, Anissa Jones, who at 18 recently graduated from Hermantown High School. "She's probably one of the strongest girls I know. She never gives up a fight."


Then Jones, who was talking over the phone, chuckled and added, "She's pretty sassy."

Big brother Steve Long Jr., 22, in an email, wrote: "I've watched her fight for 18 years, and I've never seen her situation affect her attitude or the way she would choose to treat other people. Her outlook on life is infectious."

Rao echoed that, saying Morgan had become like family to her.

"I think I myself have learned a lot by seeing her attitude," the doctor said. "Every time I've given her bad news, the first thing she's done was make sure her parents were all right."

At the same time, Rao said, "She's also the most fun-loving, innocent kid."

Rao laughed when volunteering her favorite thing about Morgan: that she wore Converse tennis shoes to her prom.

She was wearing bright, black Converse tennis shoes during the interview this week, but she's no longer able to do very much walking on them. She had "a couple of spills," she said.

Over recent weeks, she has noticed her own condition deteriorating daily, Morgan said.


She feels more pressure on her brain. She gets light-headed easily, which is why she either has help close by when she tries to walk or uses a wheelchair. She gets out of breath quickly - panting for breath as she walked across the room with her mom at her side.

"My words get mixed up a lot," she said.

Because of that, her mom sometimes helped her complete her thoughts, quoting things Morgan had said earlier. That included her notion of a fun celebration while she's around to enjoy it.

"Why in the heck do I want people to come and see me when I'm dead?" Molly said, quoting Morgan. "I want to see people when I'm alive. Can we have a party? Let's have fun."

Morgan summarized it: "I just always try to stay positive," she said. "I don't think about the negative."

Still, the Longs know they are facing a new chapter. Morgan now has "11 brain tumors that are growing and pushing," Molly said. Five of those developed within a recent two-week period.

"I do fear our life will be extremely difficult for days, months and years," said her dad, Steve Sr., in a telephone conversation. "It's a parent's worst nightmare to lose a child."

But the Longs, who lived in Duluth's Piedmont neighborhood while Steve Jr. and Morgan were growing up, know they have support. Morgan is receiving care at home through Essentia Health-St. Mary's Medical Center hospice. "They're good at just making me comfortable and not in pain," she said.

When alone, she likes to listen to music, but her closest friends are always there for her, Morgan said.

The depth of that support was shown on Jan. 30, 2014, with fans of Duluth Denfeld, East and Marshall schools wearing white T-shirts with the words "Morgan Long We Believe" on them in blue for a hockey doubleheader. Then-Mayor Don Ness attended, proclaiming Jan. 30 to be "Morgan Long Day."

Exactly a year later, Molly said, Ness called the Long home, leaving a message reminding Morgan that it was her day.

"I wanted you to know that I'm thinking of you on Morgan Long Day," he said.

Through 18 years of fighting cancer, Morgan has made the rest of her family stronger, Molly said.

"And now we have to promise her that we're going to continue to be strong," she said, fighting tears. "I just don't want her to go to heaven worrying about her mom and dad and people that love her, because we're going to be OK.

"We promise her that."


What: Celebration of Life for Morgan Long, including pizza, dessert and a live DJ, and the release of monarch butterflies

When: 4-7 p.m. Friday

Where: AAD Shrine, 5152 Miller Trunk Highway, Hermantown

Price: It’s free and open to the public.

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