TYLER UPDATE

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TYLER HAS COMPLETED HIS FOURTH ROUND OF CHEMOTHERAPY AND IS DOING AS WELL AS CAN BE EXPECTED. HE HAD A SLEEPOVER WITH SOME OF HIS SCHOOLMATES AT A FRIEND’S HOUSE LAST WEEK AND HUNG IN WITH THE REST OF THEM WITHOUT GETTING TOO TIRED. THERE’S A MOONLIGHT BOWL AT A LOCAL BOWLING CENTER THIS SATURDAY AS A FUNDRAISER FOR THE FAMILY. I CAN’T BOWL ANYMORE, BUT WE’LL BE THERE TO SUPPORT MY DAUGHTER AND GRANDSON. WE PAID FOR TWO T-SHIRTS,WHICH MOST OF THE PROCEEDS GO TO THEM AND THEY’RE HAVING A SILENT AUCTION.

BELOIT IS THE TOWN JUST ACROSS THE WISCONSIN BORDER. THEIR PAPER HAD A REAL NICE ARTICLE MONDAY ON MY BOY.

Rockton boy coping with rare cancer

Posted: Monday, March 9, 2015 4:00 pm

By Hillary Gavan hgavan@beloitdailynews.com | 0 comments

ROCKTON — Friends are the best medicine for 6-year-old Tyler Levine. Despite undergoing chemotherapy, the first grader attends Rockton Grade School and Skypes with his friends when he’s in the hospital.

“For the most part, you wouldn’t know what he’s going through because of how high his spirits remain, especially when he’s around other kids,” his mom Alisha Levine said. “He’s a good kid, and people remark all the time how well he’s doing. He’s showing great courage, bravery and strength.”

Tyler is undergoing treatment for a rare former of cancer called peripheral primitive neuroectodermal tumor (PNET), also known as Ewing’s sarcoma. Alisha said everyone at Rockton Grade School has been extremely supportive, especially Tyler’s teacher Amy Stevens, Principal Glen Terry, school social worker Rebecca Rathe and other children and parents.

Tyler has a special room at school where he can rest, and teacher’s aide Laurie Yost sits with him. His friends at his Roscoe YMCA aftercare made him a quilt and have signed their names to it to show support.

Tyler’s mom Alisha is a well-known Zumba instructor from Roscoe who works at State Farm Insurance in Rockford for Julie Weaver. Tyler’s father is Jason Levine of Loves Park, who works at Rockford Health System.

Alisha describes Tyler as “a perfectly healthy, normal and happy 6-year-old.” All boy, Tyler loves dragons, dinosaurs, sports, video games and is a “strategist” at Monopoly.

It was during a bath on Dec. 11 that Alisha first noticed Tyler’s neck was swollen. Within a week he had undergone a biopsy for the mass and was put in a neck brace. The mass, pressing on his spine, had crushed a femoral artery and doctors were concerned about the stability of his neck.

By New Year’s Eve, Tyler’s parents learned the mass was a fast-growing primitive neuroectodermal tumor (PNET) or Ewing’s sarcoma.

Ewing sarcoma is a cancer that starts in the bones or soft tissues. The condition occurs mostly in children age 10 to 20. Approximately 200 new cases of this type of tumor are diagnosed in the United States each year. More than two-thirds of children with the localized disease become long-term survivors, according to Texas Children’s Cancer and Hematology Centers.

Fortunately, Alisha said Tyler’s PNET is localized and is shrinking thanks to a 30-week chemotherapy regimen. Tyler, who has a port installed in one of his veins, undergoes chemotherapy treatments at Ann & Robert H. Lurie Children’s Hospital of Chicago. Tyler receives chemotherapy every two weeks, alternating between a 2-day cycle and a 6-day cycle.

His mother explained the next step in Tyler’s treatment is what is referred to as “local intervention,” either radiation or surgery scheduled to begin the last week of March. After Tyler undergoes additional scans, his parents will meet with his medical team at Lurie to determine which option will be best for him. Although it’s unlikely the tumor will be completely gone, so far it’s getting smaller.

Tyler and his mom are trying to make the best of the situation, keeping life as normal as possible. Tyler plays video games and Legos in the playroom. Alisha tries to maintain balance and her physical fitness through yoga and other workouts when staying at the Ronald McDonald House.

However, there are still challenges for Tyler such as nausea, fatigue and hair loss and low blood counts, which lowers his body’s ability to fight infection. Alisha said Tyler’s undergone three blood transfusions so far. Tyler also receives a booster shot after each treatment cycle to help boost his blood counts. If his temperature gets too high, his parents have to call his oncology team and take him to the emergency room.

After Tyler beats his initial battle he will have to get an echocardiogram once a year for the rest of his life to monitor for any potential long-term effects from his chemotherapy.

Although Tyler is covered by his dad’s health insurance, his parents are dealing with missed time at work, prescription co-pays, gas and food costs associated with travel to the hospital.

Alisha said she’s been amazed with the depth and swiftness of support the family has received. Many people have dropped meals off at her home, others have given donations or sent Tyler gifts such as a teddy bear he recently received from an anonymous donor.

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Bowling event scheduled to benefit Tyler

A Tough for Tyler Moonlight Bowl event is being held Saturday, March 14 at Don Carter Lanes, 4007 E. State St., Rockford. The event will benefit Tyler Levine, a 6-year-old battling Ewing Sarcoma, a rare form of cancer.

The cost is $15 each or $30 per couple. It includes three games of bowling and shoe rental. Check-in is at 4 p.m., with a start time at 4:30 p.m.

Beloit Regional Hospice

Although lanes are still available, those who don’t wish to bowl are invited to come and show their support for Tyler. Donations are suggested, and pizza will be $10 for those not bowling.

There will be silent auctions and a 50-50 raffle. Some of the silent auction items include tickets to a John Cougar Mellencamp concert and an Ice Hogs gift basket. There are gift cards from Green Fire, Wired Cafe in Rockford, the Rockton Dairy Haus and more.

Tyler Levine’s mom is selling “Tough for Tyler” T-shirts. They are $20, with more than half of the proceeds going to help the family. Tyler’s uncle David Rogers made the logo for the shirt.

People can e-mail toughfortyler@gmail.com for any information on the event, potential donations or to purchase a T-shirt.

Anyone who would like to follow Tyler’s story can go to http://www.caringbridge.org under “Tyler Levine” or subscribe to the “Tough for Tyler” Facebook page.

People can also submit donations to the GoFundMe account at http://www.gofundme.com/b8zn2o called “Tyler’s Medical Fund.”

I WANT TO PERSONALLY THANK ALL OF YOU FOR YOUR PRAYERS AND YOUR SUPPORT.

8 Comments

Filed under Family & Friends

8 responses to “TYLER UPDATE

  1. Thank you for the update, Pete. And the pix; a pleasure to see Tyler’s smiling face.

    Beloit… Beloit… seems I’ve heard of that place. Has a college?

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  2. Pistol Pete

    Yes,they do.It’s a four-year,private college.I think it was chartered in the late 1800’s.

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    • I’m ribbin’ ya, Pete. Surely I’ve mentioned I was condemned to Beloit for my college years. I left when I discovered that “four-year” college kept changing things so I’d be there much longer.

      Wasn’t a complete waste of time. Got to be a DJ on WBCR-FM (5 watts, with a Northern wind you could pick us up in Rockford). Funny to see the Beloit Daily News mention – when I was for a term news director for WBCR, I’d read it every day.

      Oh, yeah… one other small matter. Beloit was where Milady and I met. She was one of several transfer students imposed upon our rapidly-failing college-owned Frat house. One day, we kissed. …♥

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  3. chrissythehyphenated

    Beautiful update!! Going to go now and post this to my praying ladies group at Facebook.

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  4. Ting

    Thanks for the news. Still praying for Tyler everyday. I have gotten really, really busy lately so I barely have time for a quick late night browse, but I am reading as much as I can, and appreciate everyone’s efforts.

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  5. Pete, Tyler will be included in my prayers. I honestly hope that he will be able to defeat this thing.

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  6. Just saw this, Pete! So sorry to hear about Tyler’s health problems, but I’m glad that he (like my youngest daughter) are fortunate enough to live in a time when medical science can try to do something about them!

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  7. Still praying, Pete! God bless you folks and Tyler especially!

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