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Mom writes book to help kids cope with cancer diagnosis

Selene Benitone found a way to tell her kids she had cancer by writing a book for them

By Bartholomew Sullivan (Contact), Memphis Commercial Appeal

Saturday, April 4, 2009

WASHINGTON -- Selene Benitone, in a yellow "Survivor" T-shirt, sat on a couch in her Capitol Hill row house recently to describe her "really bad" cancer diagnosis and what she has done to help her children accept it.

Rebecca Drobis/Special to The Commercial Appeal

Selene Benitone, with two of her children Banks, 6, and Ella, 5, says of her book: "It really, truly takes the fear out of the unknown and supplements it with a family being open and communicating together."

Drawings for Selene Benitone's book, "Mommy Without Hair? My World Turned Upside Down," were done by Memphis illustrator Jeanne Seagle.


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The Memphis native, who met her Air Force lieutenant colonel husband, Trevor, at a lock-in mixer at Grace-St. Luke's in Memphis when both were in junior high, will read and sign copies of her just-published "Mommy Without Hair? My World Turned Upside Down" at Davis-Kidd Booksellers on Perkins Extended on Tuesday.

Benitone, 35, has small-cell lung cancer that has metastasized to her spinal column and brain. She also has three children: Coleman, 14, from a previous marriage who lives in Memphis with his father; and Banks, 6, and Ella, 5, both of whom go to kindergarten and preschool in Washington.

"Never in my 23 years of taking care of cancer patients have I met a young woman with such dedication in orchestrating her own care," Memphis oncologist Kurt Tauer said in a book blurb. "I know parents will find the book very helpful in dealing with this very tough situation."

Benitone's cancer diagnosis was made at the Air Force base

hospital in Albuquerque, N.M., where Trevor flew C-130s on special operations missions with Navy SEALs and Army Rangers. It was Sept. 27, 2006. Follow-up tests at the Mayo Clinic in Minnesota confirmed the worst.

"My husband and I could not find anything that we felt was appropriate to explain this hard diagnosis that we ourselves were having an incredibly tough time just trying to absorb," she said. "We had no idea how to even begin to tell them."

She and Trevor would spell out "c-a-n-c-e-r" around the kids, but eventually, the time came to tell them. She had already cut her hair short so its sudden disappearance wouldn't shock them, but over dinner, she explained how more things were likely to change.

"I sat them down with my husband right there at the kitchen table one night over dinner, and no one was around except for us, and it was just, 'Mommy is really sick and I'm taking some really strong medicine to help mommy feel better ... and I'm not going to be able to come to school and read like I used to ...' They listened intently.

"Then I said, 'And mommy may lose her hair,' and the middle one (Banks) just started crying. ... He just put his head down on the table and started sobbing. Then I started crying. Then my husband started crying, and I said, 'It's O.K. It's going to come in a little bit every day.' "

That's when then-21/2 -year-old Ella went to her parents' room and retrieved what Benitone calls a "horrendous" wig from a bedside table, put it on and started a snake dance. "She started laughing and giggling," Benitone said, "and we just were dying out laughing."

Exactly 14 days after her first chemo session at the West Clinic on Humphreys Boulevard, her hair did begin to fall out -- "I mean to the day," she said.

Doctors say that the kind of cancer she has is an old cigarette smoker's disease, usually caught when it's too late. But she never smoked. Her doctors are determined to attack it aggressively.

When Benitone's condition started looking better, Trevor arranged a transfer to the Pentagon and began working with legislative affairs, and the family moved to a house just steps from a city park and six blocks from the Capitol.

Trevor, 36, is military aide to Sen. Arlen Specter, R-Pa., until December. A graduate of Memphis University School and the U.S. Air Force Academy, he was promoted early to lieutenant colonel. Despite a fast career track, his military bosses have urged him to leave the office behind when he goes home at night.

Trevor said his wife gets exhausted and has some short-term memory loss due to the radiation, but she's as physically strong as ever. He mentioned that Dana Reeve, wife of actor Christopher Reeve, died of the same kind of small-cell lung cancer that Benitone has, just a year after it was diagnosed.

"Just through luck or God, she got ahead of it," he said of his wife's experience. Her "first foray" into book publishing, he said, came because there was nothing "funny and cute" on the subject, and her kindergarten and first-grade teaching background made her want to meet that need.

The genesis of the book came on Benitone's return to Memphis from Albuquerque, where she surprised her husband on his last day with his squadron. He had taken a humanitarian assignment at a desk job at the Air Force ROTC office at the University of Memphis prior to the move to Washington.

"I pulled in the driveway, ran inside, got out some paper and started writing like crazy," she said. A friend told her it needed "more meat" and more of a "heart-felt touch." She took the advice, she said, "And it was done."

Banks became Jack. Major, the family's golden retriever, became Buddy. "The book is depicted through our family," she said.

"It doesn't deal with death," she said. "It doesn't even portray that aspect. It simply breaks down cancer and a cancer diagnosis in a very nonthreatening way for children 3 to 10 to understand."

From her own experience, she drew out the message of the book.

"Kids want to know, can you catch cancer? Is it like a runny nose? That's huge. No, you cannot," she explained. "The other questions -- what's an X-ray? Is it going to hurt you? What do you mean you have to go to the doctor and give blood? What's that going to feel like?

"It really, truly takes the fear out of the unknown and supplements it with a family being open and communicating together," she said.

Memphis children's book illustrator Jeanne Seagle, one of several Benitone met with, asked for a verbal description of their family "and drew us like she'd known us for years," Benitone said. The artist is currently painting wall murals at St. Jude's Children's Research Hospital.

In early March, Benitone underwent a second Gamma Knife procedure at Johns Hopkins University in Baltimore, where radiation was focused to zap two small brain tumors. Last summer, she went through more chemotherapy when subcutaneous lesions were discovered.

"I'm not in remission," she said, as she stood in her kitchen, where a 1997 Beale Street Music Festival poster is framed and a refrigerator is adorned with preschool drawings. She works out at a gym. Her hair is short, but not unusually so. She has a piercing gaze.

"I'm still checked every three months," she said, shrugging. "I just continue to think positive thoughts. And the kids keep me going."

Meet the author

A book signing Tuesday at Davis-Kidd Booksellers will begin at 6 p.m.

Read more about "Mommy Without Hair," including Selene Benitone's 13 tips on getting through cancer treatment, at JacksBackPack.com.

Benitone will also sign books at Kids Town, the semiannual children's consignment sale event, on April 9 and 10 (10 a.m. to 5 p.m.), and April 11 (9:30 a.m. to 2 p.m.). Kids Town is held at AgriCenter International, 7777 Walnut Grove in Cordova.

Besides Davis-Kidd, the book is available at JacksBackPack.com or through Amazon.com.

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I think this type of book is a great way to tell children what is going on in a persons life who has cancer of any type and how to help them deal with it!!

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