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Monday, May 2, 2016

Summer's life after the cure

Monday, January 19, 2004

Summer Raines was diagnosed with Leukemia when she was 2 1/2 years old in August, 1991. She has been cured of the disease and celebrated her 15th birthday Jan. 9th. Last week Summer's mother, Kristi Raines, discussed what their life was like then and how the illness affected the family, including Summer's dad Larry Raines and 13-year-old triplet sisters, Sunni, Spring and Stormi.

"Dr. Jakacki was the pediatric neuro-oncologist who treated Summer," Kristi recalled. "She was wonderful. We were pig farmers when Summer got sick. The first day we went to Riley Hospital, Dr. Jakacki was waiting for us. And she had a little stuffed pig in her pocket for Summer.

"The doctor wore a dress suit, a white lab coat and bobby socks and tennis shoes. She said she didn't go to school to become an MD to have to wear high heels and be uncomfortable. Bobby socks and tennis shoes became her trademark," Kristi said.

"Summer liked that. She identified with that. When she was able to go to church, she'd get all dressed up in her frilly little dresses and she'd insist on wearing white socks and tennis shoes. And of course, the triplets had to do that too because big sister did."

Kristi had only good things to say about the treatment Summer received at Riley. Her main caregiver throughout the course of the treatment period and follow-up care was a nurse practitioner, Pattie Rubino. Rubino continues to be Summer's primary caregiver for her annual check-up, after 13 years. Kristi feels that the continuity of care was important in Summer's recovery.

But Kristi said they had lots of help. "I don't think we could have done it alone. We lived in Larry's old home place then. He worked at the Putnamville correctional facility plus ran the farm. Larry's mom, Ernestine Raines, lived next door. She helped as much as she could.

"And my mom, Ruth Haas, helped a lot. She came to the house or made trips to Riley, sewed clothes for the kids. She was a big part of the girls' lives.

"If Summer ran a temperature of 101 degrees we had to take her to Riley immediately. The triplets weren't allowed into the hospital because they hadn't had chicken pox but could have been exposed and could be carrying the germs. We had a lot of emergency runs to Riley.

"I had some old family friends from Lafayette who were like grandparents to me," Kristi continued. "Dale and Viola Hughes and their daughter Barbara Tarter would come anytime, day or night, on a minutes notice, and take the triplets to Lafayette for as long as was needed."

Summer never had a relapse. Five years after the remission date, she was considered cured from the disease of Leukemia.

After-effects from the treatment, however, continued. Summer experienced frequent ear infections. She had tubes placed in her ears several times.

Repeated antibiotic treatment resulted in an allergy to penicillin. Due to scarring of the eardrums Summer has a low frequency hearing loss. She had surgery in January last year to patch one of her eardrums. Her ears will probably be a continual problem for Summer. She may or may not have different medical problems in the future resulting from her history.

Perhaps one complication of the disease was erosion of family structure. The stress of trying to raise four little girls with the emotional fluctuations of caring for a sick child took a toll on the Raines's marriage. They were divorced in 1994.

"He's a really good dad," Kristi said of her ex-husband. "He tries to be active in their lives."

Summer is an active teenager. The Northview High School freshman plays clarinet for the Northview Knights Marching Band. She went on a trip to New York with them after Christmas.

"One of the highlights was going to Ground Zero," Summer said. "It's overwhelming when you see it. You never think someone would want to do that to other people."

Besides working at Ritter's Frozen Custards when it's open, Summer sometimes helps Spring and Stormi on their routes carrying The Brazil Times. She hopes to attend college after graduation maybe to study criminology or animal science.

The sisters get along like most siblings. They argue at times but get along with one another well sharing a special camaraderie. The triplets are in 7th grade at North Clay Middle School.

"I think being in different schools is better," Summer said with mischievous grin. "Now they can't run home and tell Mom every little thing I do."

While Summer is not officially allowed to date, she does attend social functions with co-ed groups of friends. She admits that there may be one boy who is special.

On her birthday, after playing in the Hoops band at the basketball game, Summer went to the bowling alley with a group of friends.

She does not remember much of what happened during her diagnosis and treatment of leukemia because she was so young.

"I remember going to Riley and staying there a while, and some doctors and things. But I don't remember a lot."

And because she doesn't remember, Summer doesn't think the disease affected her life that much. However, her mother said Summer got the flu about a month ago and was very sick.

"It was like a light came on for her," Kristi said. "She finally realized what had happened to her as a young child and that the possibility of it coming back was there.

"She thought she should go to Riley and be checked out," Kristi continued. "Patti said the chance of Summer getting leukemia now is really no greater than someone who's never had it. But she also said that fear was not unusual."

"I feel that I'm very lucky," Summer said. "I think everybody needs to be glad they're here. Not everybody is lucky enough to be healthy."

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