'Fighting monsters': Youths tackle cancer through writing

Teens win contest sharing their stories of suffering or loss because of cancer

SPECIAL TO THE STATESMANJune 8, 2014 

They are not the memories that equate with childhood. Hospice at home. Flecks of hair falling ng into a cereal bowl. Brain tumors. Bone tumors. Leukemia. Medication reactions: hands inflating like balloons, unrelenting exhaustion and nausea. Isolation. Loneliness. Doctors. More doctors. Death. And more death.

And these are not the lessons that equate with childhood. Appreciate the small stuff. Gratitude for another day, another month, another year. Thankfulness for family and friends. Knowledge that kids aren't invincible, and that cancer can alter a life at any age. Courage to say goodbye. Valor to move through pain and suffering. Grit to get on with life.

They are kids with cancer or whose parents, friends or relatives have cancer, and they have taken the time to reflect how their worlds were shaken by "monsters," said Landon Purser. Landon, now 17, took first place in a teen writing contest for cancer patients and others affected by a loved one diagnosed with cancer. The contest was sponsored by Cancer Connection Idaho. The organization received about 75 entries, and six winners were selected: three cancer survivors and three whose family or friends had been diagnosed with cancer.

There are three things you need to know about me. First I love to read, second my favorite kind of food is Italian, and third I have spent most of my life fighting monsters. When I was little the monsters would hide under my bed and come out at night to try and scare me. Years later the monsters took on a slightly different form. They grew to be six foot two and started to smell like feet and I would usually see them prowling the halls of school. But without a doubt the scariest form the monsters ever took was the form of a single-celled organism that found its way into my body when I was 11 years old.

Landon's journey began with a fall. His mother brought him to a doctor who ordered a scan and found something unexpected: a tumor.

Everything at the hospital was very different and it was never different in a good way. Probably the most dramatic part of those first few weeks was losing my hair. I remember waking up the Sunday after Thanksgiving and going downstairs to fix myself some cereal, and as I was eating the cereal I noticed these little dark things that kept falling into the bowl. At first I was confused because I looked up and I could not see anything that they could be coming from, and that's when I realized that I was watching my hairs fall out one at a time into my cereal bowl. It was a very long time before I could get myself to eat again, and I still don't eat cereal.

The young boy thought briefly about the pros and cons of leaving this world by his own hand rather than leaving it to the doctors and the medicines and the hospitals and the surgeries. He'd already been through his first surgery and was at the hospital for treatment. He knew a friend had just been diagnosed with cancer and was getting treatment at the same hospital. Landon found Caleb in his room and they spoke for a few minutes while he was waiting for doctor's order to leave.

Landon said that Caleb was "bubbling over with cheerfulness." Landon said he became determined to figure out how he could appear so happy and whether there was a lesson to be learned from his friend's approach to similar news. Caleb's effect got Landon through more surgeries, including a knee replacement. It helped during his three-month stint in a wheelchair. It helped with the monsters.

I went into the hospital a carefree 11-year old boy, and I left it a grown-up 11-year-old man.

KATE SIMONDS: 'I MISS DREAMING OF ADVENTURES'

Kate Simonds understands a lost childhood. Her essay also took first place in the family and friends category of the writing contest. Kate was in sixth grade when her father was diagnosed with a brain tumor. A kid shouldn't know the word "glioblastoma," but Kate did. The brain tumor killed her maternal uncle five years before her father was diagnosed. "I already knew the ending of this story," she said.

Cancer is a thief … the magical childhood moments I'm supposed to remember have been lost forever, looted of life from the inside out. My upbringing is defined by memories of hospice and funerals rather than what it should be composed of: my favorite movements at Disneyland, trips to the Fish Park, my little sister's birth.

She thought that her father had been through the worst of the disease and its treatments and that his fate was sealed by scans and a report that said remission. But a year ago, five years after the initial diagnosis, a new tumor appeared in another region of his brain. Hospice workers are now part of the fabric of the day-to-day activities of the family.

"My dad is the most amazing person," said Kate, now 17 and a junior at Timberline High School. "He is noble and kind. The kindest person I have ever known."

She spends a lot of time volunteering. This passion for helping others stems from the lessons of kindness she received growing up with her dad. "I'm very active in the community and exceptionally enthusiastic about making the world a better place," said Kate.

At home, Kate was often quiet about her father's illness. She heard about the contest and decided to tell her story. She didn't show her parents until after she submitted it.

… The feeling of my stomach dropping on the elevator ride to room 1491. It is makeup running down my face in a stream of tears, staining small black dots on the wrinkled collar of a shirt I am afraid t o wear again. It is the aftermath of these tears, the mascara painfully drying into the pores of my cheeks and necks. It is the agony of scrubbing it off with an abrasive paper towel from the hospital bathroom, and it is catching my own gaze in the mirror. It is having eyes so bloodshot and a face so flushed I could hardly recognize myself. It is the suffering I saw in the nurse's eyes as she watched me collapse onto the carpet on the ninth floor of St. Luke's Hospital; as if she had said, "I see this pain every day."

Before he got sick, Kate's father was in commercial real estate in Boise. He loved hiking the Sawtooths, fly-fishing, backcountry skiing and spending time with his wife and three daughters.

I miss dreaming of adventures rather than yearning for a way to take away my father's suffering. I miss not having to be strong. I miss the promising feeling of having hundreds of pages left in my unwritten story. I miss the joy in riding roller coasters at the boardwalk. ... I will always be grateful for my father, for passing on his strength, kindness and character, and for giving me his beautiful open mind. He taught me that from defeat comes life, and that's how I know someday I'll be OK, even if I don't feel that way right now.

SARAH WORTHINGTON: 'FAMILY ALWAYS COMES FIRST'

At 12, Sarah Worthington spent a lot of time playing basketball. When she began taking two-hour naps after school, which was unusual for Sarah, her mother thought she looked extraordinarily, well, yellow. Doctors checked her hemoglobin levels - three times - and the alarming numbers triggered an immediate hospitalization. The next morning Sarah was diagnosed with acute lymphoblastic leukemia.

The only thing that Sarah knew about leukemia she learned from watching a movie, "A Walk to Remember," based on a Nicholas Sparks book. In the movie, the teenager dies. "I thought I was going to die," she said. The doctors reassured Sarah and her family that this was a cancer that was usually curable with treatment. The doctors were right; Sarah survived leukemia after 18 months of hospitalizations and treatments. She's been in remission for four years. But she was left with effects from steroids that ate away at her bones, leaving tiny holes. She has bone damage in all of her major joints and spent two years in physical therapy.

Sarah graduated from high school last year and is headed to Boise State in the fall. She will major in musical composition. Her penchant for music was born during one of her hospital stays when she participated in a music therapy class for teens with cancer. Her life lessons were learned through leukemia.

The first lesson I learned was that family always comes first. My dad worked more hours at work so that my mom would be able to be with me all the time. My siblings, although they were busy going to school, still managed to make time to just hang out. Whether it was one in the afternoon, or four in the morning, my mom was always, without fail, there by my side trying to help me in any way she could.

She also became more positive and thankful for the kindness that everyone showed - from her family to school friends and teachers to members of her church to the health professionals who took care of her. She said that the final lesson she learned was to make the most of every day and everything she does.

(To listen to one of the songs she wrote for her fellow cancer survivors, go to https://www.youtube.com/watch?v=nI4Esaeuzuc&feature=share.)

KYLE BRATTON: NOT TAKING LIFE FOR GRANTED

Kyle Bratton's journey with cancer began with push-ups. He was in eighth grade, and Army recruiters were scheduled to arrive at his school in Notus, outside of Caldwell. His class was challenged to do push-ups, and Kyle thought nothing much of it. He grew up on a farm - he raises registered Angus cattle - and he had muscles and plenty of stamina. But he had such excruciating chest pain following the push-up session that the school nurse summoned his mother, who picked him up and drove straight to the emergency room.

His mother would take no chances. Her father died in his 50s of an undiagnosed heart defect. An echocardiogram revealed a tumor sitting atop Kyle's lungs and heart, crushing a main artery. The teenager was rushed into surgery to remove the tumor. It was Hodgkin's lymphoma. He said that surgeons could only take a small portion of the tumor because of its location. The surgery was followed by chemotherapy and radiation. He spent six months in isolation during his treatment. Two years after the diagnosis, Kyle was finally in remission. He returns to his doctors every six months.

Now 17, Kyle just graduated and has enrolled at Treasure Valley Community College. He wants to become an echocardiograph technician. "It's a cool technology," he said. "That's how they found my cancer."

The young man added that he has learned "not to take life for granted. And always give back." He has spent the last year raising money for the Make-A-Wish Foundation. He syndicated one of his bulls and collected more than 200 donations from people all over the country. Last winter, he sold one of his prized bulls at the Gem State Classic Bull Sale. In total he raised $20,000.

CAT CARIGNAN: 'THE DEPTH OF FRIENDSHIP'

Another winner, Cat Carignan, wrote about one of her childhood best friends diagnosed with cancer when they were in the first grade. She remembers Brianna Paige Flanders, with her completely smooth hairless head, playing Legos. Bri, as everyone called her, had a brain tumor. She wore a colorful bandana. There was no telling she was in pain by the looks of her smile and her infectious laugh, Cat said.

By fourth grade, Bri was in and out of her classes at the Riverstone International School in Boise. There was a short window of time when she got strong enough to stand up from her wheelchair. She even took off her bandana, which led mothers to cry and kids to clap.

An inch of hair gave our family so much hope; it was a feeling only understood by people who had watched this beautiful girl fight since she was 6.

But that same year the cancer grew more aggressive. Bri developed pneumonia and died during school break. She was 10. Her classmates are now sophomores in high school.

We learned the depth of friendship and optimism and we learned how to live in moments fully. We continue to grow up and farther away from her death, but that doesn't distance us from the memories.

HENRY SHAFFER COFFEY: 'MACHETE PAIN'

Some kids who entered the writing contest remember taking care of sick loved ones. Henry Shaffer Coffey, another winner in the friends and family category, lost his grandfather to lung cancer and recalls his uncle's battle with colon cancer. Surgeons removed 14 inches of his Uncle Sean's colon, 40-odd lymph nodes, a piece of the pancreas and all of his spleen. Henry and his family took care of him. He lives in California, on a houseboat. His Uncle Sean survived. Henry remembers this:

There was a houseboat and a seagull and chicken tikka masala. There was "30 Rock" and the park and a city swallowed in fog. And there were tubes dripping liquid relief and machete pain and a sponge soaked in cranberry juice.

'WRITING IS HEALING'

"These kids are so courageous," said Victoria Goltry, MD, co-founder of Cancer Connection Idaho. "We wanted to do something for young people dealing with cancer and we knew that telling their stories would be a powerful experience for them. Writing is healing."

Both of her parents died of cancer, and she said she wrote a lot during those years. "Loneliness was a big theme in many of the entries," she said. "We are building a place at Cancer Connection Idaho where no one has to go through cancer alone."

They plan on holding an annual teen writing contest. A team of local celebrities and writers - Margo Vaughn, Bev Harad, the Idaho Statesman's Katherine Jones, Anthony Doerr and Alan Minksoff - judged the submissions.

Jamie Talan is a science writer and editor-in-chief of an art & literary journal at the Hofstra North Shore-LIJ School of Medicine in New York, where she is a clinical assistant professor of science education. She just started a writing group for cancer patients and their loved ones, sponsored by Cancer Connection Idaho and YMCA LIVESTRONG. The group meets the first Wednesday of the month at Cancer Connection Idaho at 2504 Kootenai St. in Boise.

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