A recovering Lorelai Clubb has to miss upcoming Swift concert, but hopes others can learn from her – and Swift's – upbeat message

By Jeff Truesdell
Updated September 20, 2015 12:30 PM
Credit: Courtesy The Clubb Family

The Taylor Swift concert tickets, purchased six months in advance, were a 12th birthday present for Lorelai Clubb, who was so excited to see her favorite singer later this month in St. Louis that she and her mom stayed up past midnight to jump immediately online when tickets went on sale.

Then, weeks later, Lorelai received an out-of-the-blue diagnosis: acute myeloid leukemia.

That led to three tough rounds of chemotherapy and, last month, a bone marrow transplant. While Lorelai’s recovery means she’ll have to miss Swift’s Sept. 29 show, she hopes the pop star will see her in a video Lorelai made that borrows the jaunty tune and defiant theme of Swift’s hit “Shake It Off” as a mantra for confronting the very real woes of her sickness.

“Sometimes when I have trouble going to sleep at night, my dad always tells me to try to go to a happy place,” Lorelai wrote on her Caring Bridge web page. “It has been hard for me to find a happy place since I got diagnosed, but everybody’s reaction to my video is one of my new happy places.”

Until one day last April, after Lorelai’s mom Shannon Clubb, 38, a first-grade teacher, spotted the scary purple bruise that covered her daughter’s left foot, no one had any clue Lorelai was sick.

“What is that? What happened?” her mom asked. Lorelai said her 9-year-old brother, Truman, had kicked her. Says Shannon’s ex-husband and the kids’ dad, J.P. Clubb, 38, an attorney: “He got grounded for a week, because it looked horrific.”

But Lorelai’s cold-weather clothes had covered the worst of it. “She had bruises on her leg that looked like someone took a baseball bat to them,” says her dad, “and she had no explanation for those.”

Their doctor ran a blood test, then pointed the family that same day to St. Louis Children’s Hospital, two hours from their home in Cape Girardeau, Missouri. Lorelai was admitted around 1 a.m. on April 21. She started the first of three 28-day cycles of chemo two days later.

At the hospital, Lorelai learned her blood type was was O-Positive. “Hey, that’s Taylor Swift’s blood type!,” she said. She spent her 12th birthday on July 9 with a cake in the hospital, and after the Aug. 18 transplant, was virtually quarantined with access to only a few people at a time, to reduce exposure to infection after the chemo had battered her immune system.

“After a bone marrow transplant, our kiddos are not allowed to be in any crowded space, especially a concert,” says Melody DeWeese, a child life specialist at Children’s Hospital. “We tried to see if we could pull some strings to get her there, and our doctors said, ‘Absolutely no way, we don’t want to put her at risk.’ ”

That’s when the idea for the video was planted by Lorelai’s certified music therapist, Christy Merrell.

“I have never met a patient that is more obsessed with someone than Lorelai is with Taylor Swift,” says Merrell, who works with long-term patients at Children’s Hospital on creative outlets to engage and lift their spirits. “I’m bummed I can’t go to the concert,” Lorelai told her. “Do you think you can help me write a song and maybe we can get it on YouTube and maybe it’ll go viral?”

It was not an instant remedy. “She had an idea of what she wanted to do,” says Merrell, “but she was non-committal at the time: ‘I don’t know what to say.’ And that’s typical of kids when you start writing songs.” Merrell told her: “We’ll just brainstorm some stuff. What’s it like being in the hospital?”

After spotting the beeping monitor standing next to Lorelai’s bed, Merrell hit upon the first words: “My pole’s going to beep beep beep beep beep, and it’s going to interrupt my sleep sleep sleep ”

“Yes!,” said Lorelai. “I like that! Let’s use that!”

“We created the lyrics in an hour, which is awesome,” says Merrell. “She was on a roll.”

Says Lorelai’s dad, who experienced the ups-and-downs of his sick daughter’s shifting moods: “She went from, ‘Oh, I don’t really feel like music therapy’ to ‘Oh, I’ve got music therapy!’ ”

“The process of creating the video was very therapeutic,” he says. “It took her mind off it, gave her something to do. It gave her brain stimulation.”

“If you do a good job on this video, who knows? Maybe Taylor Swift will see it,” he told her. “You could see the spark in her eyes.”

Lorelai committed the lyrics to memory. Merrell and an occupational therapist, Amy Westfall, lent backup to Lorelai’s vocal track. But when the day came to film, they had to postpone; Lorelai, unable to leave her room throughout the process, had mouth sores from the chemo, and was reeling from strong pain meds. “It was the most painful time of her entire experience,” says her dad.

Yet three days later, the filming unfolded with joy. The staff and Lorelai’s doctor danced through the hallway; construction workers outside her window got their groove on and held up signs.

Her reworked lyrics bemoaned the meds she had to “take take take take take,” and the nurses who would “wake wake wake wake wake.” But she also was eager to thank her marrow donor, and to create a message to inspire people like her.

I keep cruising, she sings.

Can’t stop, won’t stop grooving

It’s like I got this music

In my mind

Saying, ‘It’s gonna be alright.

Says Merrell: “I think it’s her way to be creative and have an outlet to let other kids know, ‘you’re not alone.’ ”

“Seeing her from day one of having a cancer diagnosis to this video, it’s like night and day,” she says. “The kid wouldn’t even talk to you. She was just shut down, scared, which is all completely normal. And now the fact that she is able to write a song and make a video telling her story is really impressive.”

“It gave her a sense of, ‘If I wasn’t in the hospital, I’d probably be listening to music and doing silly things like this with my friends.’ It’s not, ‘Lorelai, this poor kid with cancer.’ It doesn’t define her.”

Uncertainties lie ahead. The transplant is “not the beginning or the end of anything,” says Lorelai’s dad. “We’re kind of right in the middle. She’s building a new immune system. In some ways battling this cancer is a sprint, but overall it’s a marathon. You have to pace yourself.”

Lorelai missed her sixth-grade graduation during her first hospital stay, but on a visit home in early August, she was strong enough to attend orientation at her new middle school, where she and her sister Elizabeth, 13, both tried out and made the stage choir. Because she must stay close to the hospital in case complications arise in these first weeks after the transplant, Lorelai, for now, is living with grandparents near St. Louis, and receiving homework to keep up with her classmates.

“She wants to come back to seventh grade, and certainly wants to start eighth grade,” says her dad. “She wants to be home and at school with her friends. But on a scale of one-to-10, she’s probably at an eight now.”

And she’s hoping that Taylor Swift, well-known for her fan outreach, might take notice – and maybe, just maybe, drop in.

“That would be wonderful icing on the cake,” Lorelai’s dad says of his newly upbeat daughter. “But the real value of this is, it helped her get through this horrible process. It’s done its job a million times over.”

“She’s 12 years old,” he adds. “She has a million things she wants to be when she grows up.”