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Benefit set for family of cancer-stricken Oak Forest girl, 5

AvJorgensen

Ava Jorgensen

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If you go ...

What: Ava’s Angels Benefit

When: 2 to 7 p.m., May 11

Where: 115 Bourbon Street, 3359 W. 115th St., Merrionette Park

Tickets: Adults, $25 in advance, $30 at door; children ages 6 to 12, $12; children age 5 and under, free. Includes beer, wine, pop and food. Donations can be made at any First Midwest Bank location, to the Ava Jorgensen Benefit Fund.

Information: “Ava’s Angels Benefit” on facebook.com.

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Updated: May 22, 2013 6:14AM



Ava Jorgensen went to her first day of preschool on a Thursday in November.

The 5-year-old Oak Forest girl hasn’t been back since.

The very next day, Ava was rushed to the hospital for an emergency ultrasound. Doctors at Christ Medical Center in Oak Lawn eventually found a mass in her stomach the size of a grapefruit. Ava was diagnosed with Stage 3 neuroblastoma.

Neuroblastoma is a cancer that develops from immature nerve cells, according to mayoclinic.com. It can develop in the abdomen, chest, neck and near the spine, where groups of nerve cells exist, and most commonly affects children age 5 or younger, the website said.

Some forms of neuroblastoma go away on their own, while others require multiple treatments, it said. Like most families, Ava’s wasn’t prepared for the diagnosis.

“I thought there was a sensory problem,” said Ava’s mother, Amanda Tonne, 30. “We kept doing a urinalysis and nothing came back, and we had 11 or 12 done.”

But a medical screening for preschool finally led to the diagnosis.

“They noticed that she was having silent seizures,” Tonne said. “She would space out and she would bite, and then snap back to doing what she was doing. This school noticed it, and I called the previous pediatrician and I told her she was having silent seizures, and she told me that I needed to bring her to the emergency room.”

Ava was admitted on the Friday that would have been her second day of preschool.

Tonne prepared herself for the worst.

“The whole weekend, I was hearing, ‘It might be,’ ‘It could be,’ ‘It may be ... ’ ” she said. “I didn’t know anything until we talked to the surgeon who came in on Monday morning, looked at her CAT scan and all the testing she had done over the weekend and he had told me that he thought it was neuroblastoma or something else and they both had to be treated with chemo. So I prepared myself that it was cancer.

“I was in shock at first. I cried. But now it’s like normal.”

Since being diagnosed, Ava has spent a considerable amount of time in the hospital. She has undergone countless tests, a biopsy and bone scans.

She also endured five rounds of chemotherapy to shrink the mass so it could be surgically removed. On March 27, Ava underwent the high-risk surgery at Comer Children’s Hospital in Chicago, and doctors were able to remove almost the entire tumor. Chemotherapy should kill the rest of the tumor.

Ava’s fight against cancer is far from over.

“She will be in the hospital; she might need blood transfusions,” Tonne said. “She will have one more chemo after surgery, then a bone marrow transplant and then radiation, then antibodies.”

Tonne, a single mother with four other children, ages, 1, 4, 7 and 11, is facing mounting medical bills. To help, friends and family are throwing a benefit in honor of Ava on May 11 at 115 Bourbon Street, 3359 W. 115th St., Merrionette Park.

Tonne said Ava’s experience has taken a toll on all of her children.

“They all feel it, and somehow we manage,” she said.

Ava, who spends her days with her siblings and playing on her iPad, has a long road ahead of her.

“They said that this is a hard cancer to fight,” Tonne said. “I think she is going to be fine. It’s just later on that I’m scared. All the chemo she’s been through can damage her organs. I hope she can live a normal life after this.”



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