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Spunky 6-year-old fights on

BY REBECCA MORIN | FEBRUARY 06, 2014 5:00 AM

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Behind the frames of 6-year-old Kyla Tome’s red-rimmed glasses, she wonderfully mimicked every line from Disney’s Cinderella and hummed every melody, as she lay in her mother’s arms in a hospital bed large enough to cradle them both.

Cinderella isn’t the only Disney princess to give Kyla peace.

“She got to take a Make-a-Wish trip to Disney World,” said Amanda Tome, Kyla’s mother. “She got to eat breakfast with all the princesses. She had just had brain surgery a month before and was not feeling well. She was very thin and it was the only time she really looked ‘sick.’ Snow White, Ariel, and other princesses came over, and she was just over the Moon. They kissed her on the top of her head and left lipstick marks. She was just so happy, and they made her so happy, and that made me happy to see her happy.”

Kyla was first diagnosed with type-I neurofibromatosis — which can cause non-cancerous tumors — as a toddler. But after a routine MRI, doctors discovered a brain tumor in February 2011.

“She doesn’t look sick — she always looks very healthy, which is a blessing,” Tome said.

Starting in July 2011, Kyla has undergone four different types of chemotherapy and finished her last round early January. However, only one type of chemo has slowed tumor growth. None have ever stopped the growth.

Kyla is currently undergoing her last alternative — radiation.

“If they do radiation, they can cause other tumors to grow, but we decided to go forward with radiation and hopes that it helps,” Tome said. “Four to six weeks after radiation they will repeat an MRI, and if it has not stopped growing, I have no idea what they want to do.”

Kyla resides at the Ronald McDonald House. She’ll live there until she finishes radiation on March 3.

But Kyla’s home and her heart is in Waterloo, where she lives with her mother and father, Pedro Cagal-Tome, as well as her 14-year-old sister, Rosa, and 5-year-old twin siblings, Jazmin and Jiovanni.

Regardless of where she is located, Kyla still does many of the things she loves, such as creating cards for family members.

“I like to draw,” Kyla said.

With The Big Event approaching, Kyla is excited about taking part in the night again.

“Last year was the first year we went to Big Event,” Tome said. “I cried walking into the ballroom. They don’t know me, and they don’t know my child, but they’re giving up 24 hours of their lives for us.”

Ashley Wachendorf, a Dance Marathon family representative from the family-relations department, remembers the first time she met Kyla and Tome. Since then, she has only grown closer with the family.

“I first met the Tome family last year at our Putnam Museum Family Event. They were so sweet, and Kyla and I spent some time making paper airplanes out of napkins and such,” Wachendorf said. “While we were talking, Amanda mentioned that they would like to be a part of the family representative program, so I mentioned it to our director, then requested them to be my rep family … once they were officially my rep family, I was able to send them letters, and Amanda and Kyla invited me to visit them at the hospital. Since then, we have gotten very close and I have come to know the whole family.”

Kyla’s spunk shines through every moment of her life.  One memory UI junior Wachendorf will never forget is when she and the Tome family attended a Dance Marathon event at Lost Island Waterpark.

“Every time I get to see Kyla, it makes my day, but one of my favorite days with her and her family was when we went to Lost Island Waterpark with Dance Marathon,” Wachendorf said. “It was so cold her lips were blue, but she was having so much fun. Her siblings were there, too, and that was the first time I really got to know them. The entire family makes me feel so welcome. I am very blessed to have asked to eat lunch with them last year.”

As Dance Marathon approaches, Tome will never forget the number of hours the dancers and leaders put into the event.

“I really appreciate Dance Marathon,” Tome said. “I hope that one day, when all of this is behind us, we can pay forward everything they do for us. If it weren’t for [Dance Marathon], none of this could be possible.”

“They make me better,” Kyla said.


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