Sydney’s story: Inoperable brain tumor more than just statistics

Melissa Westphal

Sydney Ives’ life changed in May with one CT scan.

She had been feeling overly tired and her mom, Tasha, noticed her usually chatty 9-year-old had become less so. Tasha chalked it up to a recent bout of strep throat.

During her first piano lesson, Sydney lost the use of her right hand. That’s when Tasha suspected a more serious problem.

Doctors diagnosed Sydney with anaplastic astrocytoma, an aggressive inoperable brain tumor. The past three months have been a whirlwind of doctors’ appointments, surgeries and radiation.

Sydney, now 10, underwent about six weeks of intensive radiation at St. Jude Children’s Research Hospital in Memphis — where she was treated to a special meeting with Disney pop stars the Jonas Brothers — and returned to Rockford with her family two weeks ago.

More than 70 friends and relatives welcomed them home and will participate in a fundraiser for the Ives family Saturday at the Rockford Speedway.

Exhaustive treatment

Tasha and Sydney agreed that the first few weeks of treatment at St. Jude were overwhelming. Sydney’s typical day there was taken up by tests from 7 a.m. to 4:30 p.m., but officials there tried to make waiting as comfortable as possible.

Sydney is taking an experimental treatment called erlotinib, which has been used for adult lung cancer patients in the past. Tasha said doctors have found the treatment more successful than standard chemotherapy for this type of brain tumor in pediatrics.

“Pediatric brain tumors have a whole different biological makeup than adult brain tumors,” Tasha said. “It attacks the cancer stem cells and tries to kill it from the inside out, to cut off its life force.”

Sydney had the maximum amount of radiation allowed for her age and size. She said it made her tired, and she had to wear a tight blue fitted mask to keep her head still during the radiation process for about five minutes a day, five days a week.

“I couldn’t stand not itching my nose,” Sydney said of the process.

She takes a chemotherapy pill once a day for up to three years and attends physical, occupational and speech therapy three times a week now that she’s home.

Hope, not statistics

The tumor and radiation have affected Sydney’s speech and mobility. She still struggles with the right side of her body, similar to what a stroke victim experiences, Tasha said.

She’s getting her thought processes back. And this week, she stopped taking steroids for treatment.

“I especially love that because steroids were gross,” Sydney said.

Doctors told the Ives family that Sydney has a 20 percent chance to live at least five years. Her radiation oncologist said she responded very well to treatment, so she is likely to fall in that range, Tasha said.

But the Iveses don’t count on statistics.

“When we told her she had cancer, she was scared,” Tasha said. “I named a bunch of people we know who have had cancer and who are still alive. And I named a bunch of people who by looking at them would be alive today but aren’t.

“So we don’t live by statistics. And we feel God is still writing Sydney’s story. So when you look at statistics, you’re looking at someone else’s story, so we just kind of take it a page at a time.”

Sydney can feel the effects of radiation up to six weeks after treatment is finished, so Tasha is watching her closely and admittedly worrying about her every behavioral change. Sydney likes to tease her mom about that, showing off her independent streak.

The welcome-home party two weeks also was a makeshift birthday party for Sydney because she had to have an emergency shunt placed in her brain on her actual birthday. Aaron’s and Gustafson’s Furniture & Mattress surprised the family with new furniture and flooring. Aaron’s also provided laptops for Sydney, her brother, Carson, and her father, Dean, and other gifts.

Worldwide attention

A social worker in Madison, Wis., recommended the Iveses start a CaringBridge site to document Sydney’s story. Tasha started the site before Sydney’s biopsy surgery May 23, and within 24 hours, the site had 1,000 hits.

As of today, the site has more than 73,000 visits from family and friends. Tasha said comments have come from places such as Sri Lanka, Singapore, Nepal and Iceland, and even from soldiers in Iraq and Afghanistan.

“That’s huge to me to know that they’re out there risking their lives on a daily basis and still caring about her,” Tasha said. “Something has caught the attention of the world with her.”

The family bought Sydney a wall-size world map and pinpointed all of the countries where people know about her story.

A wish come true

Poster-size photos of Sydney and Jonas Brother member Joe Jonas hang in her turquoise-painted room. She also has an autographed card and T-shirt from the band mixed in with magazine cutouts of her favorite Disney TV show stars.

Sydney was more than starstruck when she met the Jonas Brothers while she was in Memphis. They met with for about 45 minutes, which is more than she ever expected.

“It was supposed to be 10 minutes,” Sydney said. “All I could say for a little while was ‘yeah.’”

A hospital connection allowed for the Jonas meet-up, which means Sydney can use her Make-A-Wish Foundation request for a shopping spree in Los Angeles and a trip to San Diego’s Sea World park.

The Ives will return to St. Jude every three months for checkups. They’ll travel back to Memphis the last weekend of October with hopeful thoughts, carried by the local and international support for Sydney’s story.

“A lot of things our insurance won’t cover because the treatment is experimental,” Tasha said. “But (St. Jude) won’t charge you for it. That part is huge. But will she always be at St. Jude? You never know. We’re not sure what she’ll need. We’re trying to be smart and prepare for things in an unknown future.”

Melissa Westphal can be reached at (815) 987-1341 Read more about Sydney’s story