University of Texas at AustinDivision of Diversity and Community Engagement

The Daily Texan: Childhood cancer survivors reflect on experiences, frustrations, triumphs

by Emily S. on October 9, 2013

in Disability Advocate, SSD Students

Many childhood cancer survivors can benefit from SSD services while they are at UT because of the lasting effects of their cancer treatment. It’s great to hear some of these students reflect on the lessons they learned through their experiences with cancer in this story by The Daily Texan.

Though many children have strong attachments to comfort objects, senior Kalie Kubes had a special relationship with her stuffed kangaroo: She kept her company during radiation treatment for childhood cancer, sometimes for entire days when she had no significant human interaction.

Kubes, an applied learning and development senior, said she remembers being in a room enclosed by glass during her radiation treatment for several days.

“Whenever I went through radiation I would always have my kangaroo stuffed animal with me,” Kubes said. “Through radiation, they would have to put like a tape ‘X’ across my stomach where my kidney was, where the radiation would be done, and I was so scared … So I would have my kangaroo with me and they would put a little tape ‘X’ over her pouch too.”

As National Childhood Cancer Awareness Month comes to a close, UT students who survived cancer in their own childhoods reflect on their personal experiences, frustrations and moments of triumph while wrestling with cancer.

Less than one percent of all cancers are diagnosed in children aged 0-14 and young adults aged 15-24, according to Cancer Research UK. The survivors of these cancers and their treatments often face lasting side effects, such as disabilities, growth impairment, weak immune systems and risk of further cancers.

“Survival rates for childhood cancer have changed dramatically over years,” Barbara Jones, school of social work Associate Professor, said. “They are 80-90 percent for a child diagnosed today. It’s fantastic. But that means we have a lot of people dealing with the side effects of childhood cancer.”

Kubes was first diagnosed with neuroblastoma cancer when she 15 months old, and again when she was two. Years later she was diagnosed again at 18 with thyroid cancer. Though she has finished treatments she still deals with the effects of chemotherapy: muscle atrophy, chronic pain, low energy and hearing loss.

While Kubes said that she is grateful for her experiences and the resilience they taught her, her biggest fear is that one day her future children will have cancer as well.

“They’re so young,” Kubes said. “They don’t have the opportunity to be outside playing and going to school with their friends and getting dirty and having fun. I mean, when you’re a kid it’s so important to just take as many of those opportunities to just learn and grow through the things that you’re doing.”

Bucky Ribbeck, human biology senior, said that he never let himself think the cancer would beat him. However, he found that this was not the case for all pedriatic cancer patients. His hardest moment living with the disease was losing a good friend and fellow patient to cancer.

“Her name was Natalia,” Ribbeck said. “She was my first friend I ever lost … I know she’s not physically here but every day I try to live with her in mind so that she can live through me, because I know that there’s a reason that I made it and others didn’t. And I like to think that part of my duty is that these people – I should give these people a way to live through me, because I don’t want their lives to have been in vain. I live inspired by Natalia and what she did.”

Ribbeck was diagnosed with cancer in May of 2009 and finished his treatment near Christmas of the same year.

“It was probably the best Christmas gift and New Year’s gift that you could ever get – to be done with cancer,” Ribbeck said.

For some pediatric and young adult cancer survivors, staying positive throughout diagnosis and treatment was a natural response. Weston Busing, geography senior,  was recently diagnosed in May 2012 and described the diagnoses as a blessing in disguise.

“I’d say it’s the worst thing that could happen to you and it’s also the best,” Busing said. “Find the positive of every bit of it because there is positive. I think I’d say to people that they were given that hardship for a reason, you know there’s a deeper message in every bit of it.”

Other survivors of childhood cancer have used their experiences to become an advocate for childhood cancer research and awareness. Devin Duncan, public relations junior, has spoken at numerous events and interviews as an advocate.

“I would have to talk to a crowd and try to convince them of the underfunding of childhood cancer,” Duncan said. “I was just dumbfounded at the amount of, you know, so many people were afraid to talk about it … People assume that oh, well they’re children, of course people are taking care of them and people are trying to make sure bad things don’t happen to them – but that’s not the case at all.”

Duncan was diagnosed with acute lymphocytic leukemia twice, both at three years old and again 13 years later. As a cancer patient, she struggled with medications that would make her forget her entire hospital stay. Still, she is able to look back at her experiences and see the good that has come from her struggles.

“I’ve had so many doors open for me,” Duncan said. “I feel like everybody in life has this want to be something bigger than themselves and have this want to make a name for themselves. I feel like it’s really cool that even though I am the cancer girl, or the cancer advocate, I’ve made a name for myself in a way that I would have never been able to before. That’s something that’s really fulfilling.”

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