BY STARRLA CRAY
DELANO, MN Lexi Love of Delano is 17 years old, but she will never know the life of a typical teenager.
“Her body is covered in tumors from head to toe, including a large tumor she was born with that takes up her whole torso . . . .” noted her mother, Jessica Schmidt. “It’s hard to find clothes that fit her. Also she will never be completely comfortable when she lays down because it hurts her tumors.”
Lexi has a genetic disorder called neurofibromatosis, which causes tumors in the nervous system. They can form anywhere, at any time.
Because of the tumors, Lexi deals with severe developmental delays and will require care for the rest of her life.
Lexi had her first series of brain surgeries at age 10, after a tumor started pushing pressure on her brain. A story about Lexi’s journey as she handled seizures, breathing tubes, medications, and the threat of cancer was printed in the May 24, 2010 edition of the Delano Herald Journal.
Over the past seven years, Lexi has had a brain MRI every month to watch for new tumors. She’s also undergone three eye surgeries in an attempt to correct damage caused by a tumor.
Two years ago, an MRI showed another brain tumor. It seemed small and unimposing at first, but grew rapidly.
It was decided that Lexi would once again need brain surgery.
“As we were still letting it sink in and preparing ourselves to go through this again, Lexi started acting strangely,” Jessica said.
Lexi became more temperamental, started sleeping excessively, and had constant headaches.
“I asked the doctors if this could be caused by the tumor, and they said more than likely yes,” Jessica recalled.
The last day of March, Lexi woke up screaming, delusional, and in severe pain.
“We called 911 and got her to the ER,” Jessica said.
Lexi went through an emergency operation to fix a malfunctioning shunt and stop the swelling in her brain.
“The doctors said after the surgery she will be back to herself. They were wrong,” Jessica noted.
When Lexi woke up, her words were slurred, and she was screaming and throwing things.
Sensing that the problem hadn’t been fixed, Jessica requested a CT scan. It showed that Lexi’s brain was still swelling, and the shunt still wasn’t working.
Lexi went back on the operating table less than 24 hours after the first emergency surgery. When the doctor came back two hours later, he had a smile on his face.
Lexi’s shunt had been clogged, and the doctor was able to replace a part of it so fluid could flow properly.
Although the initial scare has passed, Lexi hasn’t been the same since. She loses her balance, has trouble remembering things, and isn’t able to control what she’s doing.
“It could be that this is just part of her recovery, or it could be that there is brain damage from the trauma,” Jessica said. “We have to wait and see. And pray.”
Lexi underwent another surgery Thursday this time to remove the tumor in her brain.
Lexi’s family is hoping for financial help to get through this difficult time. Jessica is employed as Lexi’s personal care assistant through her medical insurance, but isn’t able to claim hours while Lexi is in the hospital.
“This month with her hospital stays, I will be losing about two paychecks,” Jessica said. “The rent is unpaid, as well as bills. On top of all this stress that I have with my daughter’s illness, I have to worry about if she will even have a home to come home to when she is released from the hospital.”
Jessica noted that she is the only one with an income in the home, because Lexi’s stepdad was in a car accident four years ago and is now permanently disabled.
“So here I am with my pride swallowed and my head hanging down,” Jessica noted. “Please, however, if you are not able to financially help, I don’t want you to feel bad. You can still help tremendously by keeping Lexi in your prayers.”
Visit www.gofundme.com/3m1dr8w to donate.
Cherishing it all
Jessica is a firm believer in prayer and miracles. In a letter she wrote years ago, she noted that “God works in ways you can’t even imagine to make us better people, to be the way that he wanted us to be . . . unselfish.”
She noted that she hasn’t always been the best mother “I could have spent a lot more time with my kids. I could have read more stories and gave more hugs and kisses” and that she now cherishes every moment she has, good and bad.
“I will never take time for granted again,” she noted.
Jessica was told at one point to put Lexi in a home due to the stress. But for Jessica, this isn’t an option she wants to consider.
“I could never give up on my daughter. I could never leave her,” she said. “I will care for her and she will be with me for the rest of my life.”
Lexi signed up for Taekwondo before her recent issues, and her family hopes she will be able to continue after her recovery. Lexi is also active in church, and youth group is her favorite place to go.
According to Jessica, Lexi is truly one-of-a-kind.
“She will go out of her way to make you laugh,” Jessica said. “She loves arts and crafts and music. But most importantly, she’s in love with Justin Bieber and she will be quick to tell you that she will be marrying him someday.”
Jessica noted that although Lexi is not a typical teenager, she is thankful for every second they have together.
“She is a fighter. She is my inspiration. She is my reason,” Jessica noted.