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Family raises money for Oswego 20-year-old with cancer

CaitlOstrom 20 Oswego has fought genetic disorder thcauses tumor growth nerve tissue all her life. Family friends are raising money

Caitlin Ostrom, 20, of Oswego, has fought a genetic disorder that causes tumor growth on nerve tissue all her life. Family and friends are raising money to pay for treatment of the disease, which recently became cancerous. | Submitted

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To help

What: Help raise money for Caitlin Ostrom’s medical treatment.

Donations: Visit

Updates: Keep tabs on Ostrom’s progress on the Caring for Caitlin Facebook page at

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Updated: November 5, 2013 1:17PM

Caitlin Ostrom, 20, knows exactly what career she wants to pursue: pediatric oncology nursing.

She decided she wanted to help cancer patients the day she came out of surgery to amputate her right leg below the knee in the summer of 2008. It was just before her freshman year of high school, her mother said.

“She started asking nurses all kinds of questions all drugged up on morphine,” said Christine Christensen, who lives in Oswego. “That’s why I remember it so much.”

Ostrom, who graduated in 2012 from Oswego East High School, was diagnosed at 3 months old with neurofibromatosis, a genetic disorder that causes tumors to form on nerve tissue, which can be anywhere from the brain to the spinal cord.

The disease often is diagnosed in childhood or early adulthood, according to the Mayo Clinic, and the tumors are usually noncancerous, but in some cases, can become cancerous.

For most of Ostrom’s life, she’s been in and out of hospitals dealing with symptoms of the disease. Her right leg had tumors in it that grew much faster and bigger than her left leg, her mother said. The growth led to the amputation, which helped Ostrom walk more evenly with a prosthetic leg.

Ostrom has participated in drug trials and has had a number of “debulking” surgeries to remove tumors in her body.

After Ostrom’s leg amputation, her mother said, Ostrom spent several months recovering, but still managed to get good grades in school and joined clubs. She was a peer mentor, participated in student council and took honors and advanced placement courses. She was in a specialized medical program that would help put her on the track for nursing.

Ostrom was accepted at the University of Missouri and decided to go away to school. Her health had improved, her mother said, and though doctors knew Ostrom still had some tumors in her body, they didn’t see a reason to worry if Ostrom wasn’t showing negative symptoms.

But in early winter this year, Ostrom started calling home complaining of leg pain. Christensen said they weren’t sure if the pain was from a recent surgery Ostrom had received to help her prosthetic leg fit better, so Ostrom stuck it out.

Ostrom started to feel tired, so her mother advised her to cut back on university extracurriculars and focus on academics. When Ostrom visited home on spring break, she got a check up, wondering if she had a thyroid or hormone issue. But nothing was out of the ordinary.

Then Ostrom dropped 25 pounds suddenly. Doctors ran more tests this summer. One doctor said her blood work looked like she had cancer. But a specialist didn’t agree and gave Ostrom medicine for nerve pain instead.

The family was relieved, Christensen said. Ostrom decided to transfer to Aurora University so she could be closer to home. But on her second day of school near the end of August, she started to feel numbness in her body.

She went to the emergency room, and doctors detected a tumor the size of a golf ball in her pelvic region. Later tests would show it was cancerous.

Ostrom and Christensen have seen dozens of doctors since then, many of whom agreed the tumor was inoperable because of its size and location — it was pressing on her spinal cord, bowels and bladder — and had eaten into her bones.

Ostrom underwent radiation and took chemotherapy pills, but the cancer spread to her liver at the end of September.

Doctors ramped up radiation, ending that treatment about three weeks ago, and inserted a catheter in her spine that pumps heavy doses of medicine into her body to help block the pain. Like a pacemaker, it can be controlled remotely and doctors can tell the pump how much medicine to deliver.

“We are going to continue trying with some medication and alternative therapies to see if we can slow it down,” Christensen said. “Her will is for this to be gone. She refuses to think anything other than that.”

Next, her mother said, Ostrom will try another chemotherapy pill and other pain management options.

“She just has an empathy for people because she’s been through so much in her life that I don’t think anybody has,” Christensen said of her daughter. “She’s very, very caring with people. Even through all of this, she’s worried about everyone else. And she’s a fighter.”

To help raise money for Ostrom’s medical treatment, family and friends are hosting a fundraiser from 6 to 10:30 p.m. Nov. 4 at the Tap House Grill, 123 Washington St., Oswego.

The cost is $20 a person, which includes a buffet dinner from 6:30 to 8:30 p.m. The event also includes a raffle for prizes such as Bulls and Blackhawks tickets. The Tap House Grill has set up a giving tree where community members can donate grocery and gas gift cards to the family.

Donations also are being accepted at

Updates on Ostrom’s progress can be found on the Caring for Caitlin Facebook page at

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