43
Four-year-old Bailey Shane Carr was really upset when she found out the chemo would make her hair
Four-year-old Bailey Shane Carr was really upset when she found out the chemo would make her hair fall out.
“Only boys have short hair,” she said.
But now, with her 25-week chemotherapy regimen nearly complete, Bailey has hopes of soon getting her long hair back, along with three missing front baby teeth, evident when she breaks into a smile.
“We told her bald is beautiful,” said her parents, Amy and Jeff Carr of North Lima.
It was Nov. 2, 2008, a Monday, when the Carrs realized something was wrong with Bailey.
She was dancing around the house in her ballerina costume, and her mother noticed that her belly looked rounder and stuck out a little more than usual, said Jillian Shane, Bailey’s aunt and Amy’s sister.
Amy squeezed Bailey’s stomach and found that one side was soft and normal, but she felt something large and round and hard on the other side.
“Little kids have cute little bellies, but it looked bigger than usual,” Amy said.
The next day, she took Bailey to the family pediatrician, who thought she might have a liver infection. The blood-work results, however, were normal.
As a precautionary measure, the doctor prescribed a CAT scan at St. Elizabeth Health Center, and the Carrs got the news that every parent dreads. Bailey had Wilms tumor, a form of childhood kidney cancer.
Events moved quickly from there.
Bailey was examined by an oncologist at Akron Children’s Hospital in Boardman on Friday of that week, and had surgery Nov. 11 to remove a cantaloupe-sized tumor and her right kidney. Her kidney looked like an ear that was attached to the tumor, Jillian said.
The surgeon found no cancer in her left kidney and removed some lymph nodes, which were benign. A week later, two nodules were removed from her lungs, also benign, and a week after that, Bailey began a six-day regimen of radiation and her 25 sessions of chemotherapy.
“We had no clue. I couldn’t even imagine. It was very frightening. It’s the worst thing I could have ever imagined to happen to a mother,” Amy said.
“Initially, when you hear the ‘C’ word, you have a lot of feelings. You want to protect your child, but it is just out of your hands. It’s the hardest thing I’ve ever dealt with emotionally and spiritually,” said Bailey’s father.
“You have to put your faith in God and hope the doctors have enough knowledge,” Amy said.
The doctors treating Bailey at Akron Children’s, Ayman Saleh and Nibal Zaghloul, have been wonderful and knowledgeable and comforting, she said.
“Dr. Z doesn’t make you feel like you are asking dumb questions. I called him at 2 a.m. Christmas Eve, and he said, ‘Don’t worry about it,’” Amy said.
The months since Bailey’s diagnosis have been up and down for the Carrs,
Sometimes Bailey is nauseous from the chemo. She is part of a clinical trial to determine if one of the three chemicals in her chemo cocktail will help prevent relapses.
Every time they take Bailey for blood work is scary.
“It’s the waiting for the results; it creates a sour stomach,” Jeff said.
Bailey has been to the hospital twice since her diagnosis. Anytime her temperature rises above 100.4, it means a 48-hour hospital stay and treatment with antibiotics until doctors determine if the fever is caused by a viral or bacterial infection. She has also had to have red cells and platelet transfusions when her blood counts are low.
Bailey doesn’t like going to the doctor because she doesn’t want to get poked, which is how she describes getting medicine put in her port, or ‘button,’ as she calls it.
Bailey’s cancer has changed the Carrs’ lives in many ways.
Bailey has to be kept as germ-free as possible to avoid infections, which means no playing outside, no rough-and-tumble play for fear of bruising, and trying to also accommodate Bailey’s rambunctious 2-year-old brother, Cameron, in the same house. Bailey says she can hardly wait to go to school. She had to quit preschool for fear of getting an infection.
But, some good things have happened too, the Carrs said.
“It draws you closer to God. True believers believe it will work out. I’ve seen a lot of kindness and generosity,” said Jeff, a 1993 graduate of Salem High School and a 1999 graduate of Youngstown State University. He works for Total Waste Logistics in Canfield.
“We’re blessed with a good support system of friends and family,” which Jeff said includes Amy’s parents, Debbie and Lewis Shane of North Lima, and his parents, Kathy and Dennis Calvin of Salem, as well as Jillian and many others.
Amy, a 1995 graduate of Mooney High School and a 2002 graduate of Youngstown State University, expects to go back to her job at Pepsi Cola Distribution and Warehouse in Youngstown in May, after taking six months off to take care of Bailey.
Amy said the people she works for and with have been wonderful. Fellow employees brought Christmas presents for Bailey, and Amy said Pepsi has said it will work around Bailey’s schedule when she returns to work.
The Carrs have medical insurance, which has covered the majority of Bailey’s bills. Still, with the 20 percent not paid by insurance, plus the cost of drugs that aren’t covered or that have high co-pays, such as $80 for Bailey’s nausea medicine, and other expenses, the Carrs need financial help.
To defray expenses, a spaghetti dinner — with raffle baskets, a 50/50 drawing and more — is planned for 11:30 a.m. to 7:30 p.m. Sunday at St. Charles Church Social Hall in Boardman. The cost is $7 for adults; $5 for children 4-12; and free for children under 4.
The raffle includes signed items from the Pittsburgh Steelers and San Francisco 49ers; Ohio State University items signed by head football coach Jim Tressel; and Cleveland Indians items.
Donations may be made in person to the Bailey Shane Carr Foundation at any Huntington Bank. Checks or money orders, made payable to the Bailey Shance Carr Foundation, may be mailed to Huntington Bank, 23 Federal Plaza, Youngstown, OH 44503.
“Bailey is the most brave, caring, beautiful child ... such a little trouper. She is so young and innocent,” said Jillian. “She says when she gets older, she wants to help other little children who are sick. I know that one day, she will help and be an inspiration to others.”
alcorn@vindy.com