Taylor Lieber began having headaches in September and the left side of her face and eye were numb.
“Everything hurt,” she said.
Her pediatrician told her she had a cluster headache and after two MRIs, a neurologist said she had a polyp.
But when her pain became so severe, her parents Dan and Lauren Lieber turned to Ben Soumekh, a pediatric specialist for the ear, nose and throat, in Minneapolis.
They arrived at his office at 11 a.m. and by the end of the appointment, Soumekh told them it was serious and sent them to the Mayo Clinic that day.
A golf ball-size tumor was pressing on her optic nerve. The Edina High School sophomore was diagnosed with sarcoma, a rare form of cancer, in her sinus.
“We have a really bad cancer with a really good prognosis,” Lauren said.
Despite still being in the middle of her cancer treatment, Taylor wants to give back to those who have already helped her.
She spent the afternoon of New Year’s Eve selling “Conquer Cancer” bracelets at Jerry’s Foods to benefit the Cancer Kids Fund, which goes directly toward treatment for children at the Children’s Hospitals and Clinics of Minnesota. As she and her mother received hugs and well wishes from friends and passersby, some stopped to donate more money than the $5 cost for the bracelets. The bracelets can be purchased for a suggested donation of $5 by emailing email@example.com.
She’s also having fun despite the diagnosis and will be modeling for photos for The Gold Hope Project, which provides photo sessions for free to families dealing with pediatric cancer.
Lauren said the key was getting to Dr. Eric Moore at the Mayo Clinic when they did, because they would have been dealing with an entirely different situation had the cancer spread. The doctors figure Taylor had the tumor for six to eight weeks at that point, Lauren said.
Lauren also credits her daughter with letting them know something was wrong when doctors were missing it. If she hadn’t told her parents that she was also having numbness, they would have assumed that it really was only a headache.
“She was her own advocate,” Lauren said.
Ninety percent of the tumor was removed during her biopsy at the beginning of November.
A week later, they were told the tumor had re-grown in the past week and she was going to need surgery again the next day. That was followed by three days of compressed chemotherapy before going to the Children’s Hospital in Minneapolis for further treatment under the treatment of Dr. Nancy McAllister, who specializes in sarcomas.
It was hard at first to see little children without hair and hooked up to machines at the Children’s Hospital, but Taylor said she realized the children are still like anybody else.
Taylor said she’s received a lot of support, which means a lot to her. But sometimes people won’t look her in the eye when they talk to her or they don’t want to associate with someone with cancer.
“I try to show them that I’m still me,” she said.
Next for Taylor and her family is a move to Indianapolis for seven weeks beginning at the end of January while she undergoes proton radiation, which isn’t available in Minnesota yet. Proton radiation pinpoints the radiation more to a targeted spot than traditional radiation.
She’ll also have 14 rounds of chemotherapy while she’s in Indiana, traveling a total of two hours a day between the radiation and chemotherapy.
Taylor has taken it all in stride. It’s going smoothly and been easy, she said. Lauren added that Taylor has had some body aches and pain
“She’s just a good fighter,” Lauren said.
Taylor hasn’t cried about it and doesn’t want to be pitied for it. “It hit me pretty hard” when the Make A Wish Foundation came calling.
“I don’t think I have a bad enough case to cry about,” she said.
Although she doesn’t have a terminal diagnosis, it’s serious enough that she qualifies for the program.
“It’s very scary to hear your kid is a Make a Wish child,” Lauren said.
The community has been really supportive, especially Edina students, Lauren said. Lauren has also had help learning how to stay organized, remember what needs to be done and how to keep life normal for the family.
“You have to learn how to be a cancer mom,” she said.
They want to keep life as normal as possible, Lauren said.
Since Taylor is missing her sophomore year of high school, she’s keeping up with homebound schooling and may add online courses for the second semester.
Lauren said Taylor was looking forward to being in the same school with her brother Mike, who is a senior at Edina High School this year.
The two are close and Taylor said she had been looking forward to doing the school plays with him this year. She was student director of the fall musical “Bye Bye Birdie” when she was diagnosed and was able to continue working on it.
She still attends the school dances and is able to eat with her friends during school lunches sometimes.
Lauren said the school staff has been proactive in helping students who are upset about the diagnosis and Edina High School Principal Bruce Locklear was in touch with their family from the first day they went to the Mayo Clinic.