Herald Journal - Enterprise Dispatch - Delano Herald Journal
Lexi Love’s story of heartache and hope
May 24, 2010

By Starrla Cray
Staff Writer

DELANO, MN – It’s April 20. A petite 10-year-old girl lies on the operating table as her mother, Jessica Schmidt of Delano, paces anxiously in the hospital waiting room.

This is the third surgery her “baby” (Lexi Love) has undergone in the past few weeks, as top experts work to remove a large tumor in the center of her skull.

“They peel open from her head to her neck,” Jessica says, her voice filled with a sense of helplessness. “They’re digging in her brain. All that’s going on in my head is, ‘Are they going to mess it up?’”

But after eight excruciating hours of waiting, the surgeon reappears with good news.

“It looks like we got it all,” he says, the words washing over Jessica in a wave of relief.

Although the journey is far from over, Jessica thanks God that her daughter is alive.

“It has been a roller-coaster ride full of ups and downs; days of sorrow and fear, to days of strength and hope,” Jessica said.

A difficult beginning
As a baby, Lexi (Alexis) was diagnosed with a rare genetically inherited disorder called neurofibromatosis.

“It causes tumors in her nervous system,” Jessica said. The tumors can form anywhere, at any time. Because of the disorder, Lexi also suffers from developmental delays and severe ADHD.

When she was 2, Lexi got a tumor on her optic nerve (optic glioma).

“I prayed over her and got on my knees and was bawling,” Jessica said. The next day, when she took Lexi in for an MRI, the tumor had shrunk, and never caused another problem.

Recent challenges
Then, in mid-March of this year, Lexi began having headaches, dizziness, and was throwing up.

Lexi’s personal care assistant, Patrick Birotte, who is also Jessica’s fiancé, made an appointment with Lexi’s eye specialist.

“Her optic nerve was severely swollen,” Jessica said.

The next day, April 7, Lexi had an MRI done at the hospital, where doctors discovered the tumor in her brain.

“I’m freaking out at this point,” Jessica said. “I was told years ago that it could happen, but I never thought it would.”

The first surgery took place April 8, with the purpose of relieving the pressure on Lexi’s brain.

“They cut a hole in her skull and in her brain, and put a drain on the outside of her head,” Jessica said.

Surgery number two happened shortly after, in order to permanently reduce fluid buildup.

Doctors made an incision in Lexi’s abdomen and inserted a metal rod attached to a plastic tube. Both pieces were threaded up through her neck and into her head, and the metal rod was then taken out.

The plastic tube allows spinal fluid to drain into Lexi’s stomach tissue, which is able to absorb it.

The third surgery took place about a week later, in order to remove the tumor. Dr. Nagib and his team utilized state-of-the-art MRI technology in the operating room, which helps ensure complete tumor removal. The surgery took about eight hours, and it’s a day that Jessica isn’t eager to relive.

“It was the longest eight hours of my life,” she said.

The surgery was a success, but the pain and heartache were far from over at that point.

“The doctors said, ‘She’s going to be in excruciating pain for the next several days,” Jessica said. “She couldn’t move her head – she couldn’t do anything.”

After the surgery, Jessica noticed that the fluid draining out of Lexi’s head looked bloody.

“She was talking really funny, and her eyes wouldn’t open,” Jessica said. “Her brain started swelling really, really badly in the spot of the surgery.”

After nearly going into emergency surgery, a second scan was performed, and it was determined that there was still room for the swelling in Lexi’s head. Instead of surgery, doctors put Lexi on medication to help reduce the swelling.

Lexi was also put on a breathing tube for nearly a week.

“It was so terrible to see her with all those tubes,” Jessica said. “She laid there many days and nights not able to talk – just staring. And so many times, I would see a single tear roll down her face. At those moments, my heart was ripped out of my chest.”

When the tumor that had been in Lexi’s brain was tested for cancer, it was found to have both malignant and benign cells.

“This is when she’s supposed to be getting better,” Jessica said. “And then, this gets thrown at me.”

Further analysis had to be done before determining the cancer’s impact, however.

If it were in the first two stages, nothing would need to be done, because the tumor was already removed. Stage three would mean chemotherapy and radiation, and stage four would mean Lexi has a year to live.

“That’s what the oncology doctors left me with for the weekend,” Jessica said.

When the results finally came in, Jessica said she feared the worst. But, thankfully, it turned out to be stage one.

“Immediately, tears rolled down my face to the point where I was sobbing,” Jessica said.

The danger of cancer had passed, but Jessica and Lexi faced yet another scare following the third surgery.

Lexi began having seizures, which might have been caused by brain swelling.

“It’s very scary,” Jessica said. “Her whole body will go limp – she’s like dead weight in your arms.”

For awhile, Jessica was afraid to leave Lexi alone for even a minute, because she could fall and hit her head. The seizures haven’t been happening lately, however, and Jessica hopes they won’t be coming back.

Swallowing was also a problem for Lexi after her surgery, and she was on a feeding tube for two weeks.

Lately, however, Lexi’s been improving.

“She has a smile on her face, and she’s eating like you wouldn’t believe,” Jessica said. “It’s wonderful to see.”

Moving forward
Lexi was allowed to leave the hospital May 13, and now will undergo physical, occupational, and speech therapy.

The right side of her body is extremely weak, and she has been using a wheelchair and a walker to get around. Lexi’s left eye is also very droopy, which therapy will help to strengthen.

“It’s not over yet, but I’m just going to have to pray for the best,” Jessica said.

Despite suffering that, at times, seemed almost overwhelming, Jessica said she knows that all of this happened for a reason.

“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,” Jessica said. “I will be a better mom and a better person because of this life lesson. I will cherish every moment – good and bad – that I have with my children and those close to me.”

In a letter to her friends, Jessica shared what she learned through Lexi’s tumor:

“Everything in your life can change two minutes or two hours from now. We never know. It could be a tumor, or a car accident, or even a trip down the stairs. It could be you, your child, your sister, brother, or a parent or friend. Your life would never be the same. So, live every single breathing moment of your lives unselfishly. Give all of your love to those people who mean the most to you. Cherish your struggles and your triumphs together, and always know that God has a purpose for our lives.”

Donations needed
In addition to the emotional trauma that the family has been facing, finances are also very tight.

The family had lived in Louisiana during Hurricane Katrina, and lost everything.

“Ever since we came back to Minnesota, we’ve been struggling,” Jessica said.

Six months ago, Jessica was laid off from her job at a tree care company. She was recently hired at a lawn care company, but was let go when they found out about Lexi’s tumors.

Jessica also has a 12-year-old son, Orbin Love, who has Turret’s syndrome.

The family lived in Shakopee and Fridley before coming to Delano in October 2009.

Jessica said they don’t know very many people in Delano yet, but they love the town and the school.

She would like to have a benefit for her daughter, but isn’t sure how to go about it.

“We really need financial help,” Jessica said. “Everything from rent, food, gas, clothes, and even a computer for Lexi for learning.”

Because of her learning disabilities, Lexi might have to redo fourth grade, and a computer would help her keep up at school, Jessica said.

(Editor's note: the original version of this article contained a contact address and phone number for donations, which has since been removed at the family's request.)

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