Karen's Story

I'm working on a new project about Karen Rodarte, an 11-year-old who survived a rare, aggressive brain tumor. Research tells me that:

"Brain Tumor: Atypical Teratoid / Rhabdoid Tumor
This rare, high-grade tumor occurs most commonly in children younger than 2. It is generally found in the cerebellum, which is the lower, back part of the brain that controls balance. These tumors tend to be aggressive and frequently spread through the central nervous system.
Even after surgery and chemotherapy treatment, the survival rate for children younger than 3 at diagnosis is less than 10 percent. It appears that older children, when treated with chemotherapy and radiation therapy after surgery, do somewhat better long-term, nearing 70 percent.
Treatment generally involves surgical removal of the tumor followed by chemotherapy. Radiation therapy may be considered depending on the age of the child and whether the tumor has recurred."

It's wonderful that the survival rate is better in older kids like Karen, but what this doesn't tell you is the impact on their daily life. At 11, Karen's memory is heavily affected, making it difficult for her to remember even simple things like basic addition; it took her a very long time to memorize the alphabet.

Here, her teacher admonishes her to pay attention to her math work, in spite of having onlookers:


Each day she gets the challenge of having to remember her lunch code, a surprisingly long string of numbers she'll have to produce while feeling the pressure of standing in the lunch line. Here, she gets a high-five from her para-educator after she practiced the number correctly:


Karen has grown up speaking Spanish at home, and prefers it, but understands English very well and has no trouble making herself understood. She does struggle with writing in either language, though. Here, she laughs with one of her teachers, after finishing an assignment with the translation help of friend, left:


Her Spanish-speaking parents, however, are having a hard time with the medical system, especially as they continue her treatment without the benefit of health insurance. Perhaps this story will bring some Good Samaritans out of the woodwork.

In the meantime, Karen enjoys recess with her friends:


The tumor has stunted her growth, and part of her treatment includes doses of human growth hormone, an expensive substance also prized by endurance athletes. Who knows... maybe she'll grow up and become an Olympic marathon runner or something...her balance doesn't actually seem that impaired.

I have about six weeks more to devote to this story -- an eternity in newspaper time -- so I plan to record audio and create an audio slide show, which will be my first (and long overdue) foray into the multimedia trend that is rapidly becoming the future of newspapers.
I just hope I can capture Karen's hilarious giggle, which was cracking up everyone in earshot.