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A Life Cut Short But Not In Vain

by A. Maureen Rouhi
November 11, 2013 | APPEARED IN VOLUME 91, ISSUE 45

Sometimes a story tugs at your heart, and you just want to share it. Such was how I felt when I read the Nov. 1 Washington Post story about Gabriella Miller. Only 10 years old, she died on Oct. 27 from a brain tumor. From the time she was diagnosed less than one year ago, she had been advocating that attention be paid to childhood cancers. With her parents, she established the Smashing Walnuts Foundation (SWF), a nonprofit organization with a mission to raise awareness of pediatric cancers. She inspired me to find out more about the disease that killed her.

Cancer is the leading disease-related cause of death among U.S children up to 14 years of age, says the National Cancer Institute (NCI). And Centers for Disease Control & Prevention (CDC) data show leukemias and brain and central nervous system (CNS) cancers as the most common cancers among U.S. children up to 14 years of age, with incidence rates of 5.0 and 3.5 per 100,000 people in 2010, respectively.

Little is known about what causes childhood cancers. Genetic abnormalities and exposure to ionizing radiation explain only a few cases, NCI says. NCI supports research to understand the causes, including TARGET—Therapeutically Applicable Research to Generate Effective Treatments. This initiative uses genomic data and molecular characterization techniques to identify the molecular changes associated with the start and progress of childhood cancers. The goal is to enable development of treatments for young cancer patients.

NCI also supports the Children’s Oncology Group, a clinical trial group that collaborates with children’s hospitals, cancer centers, and academic institutions in North America, Europe, Australia, and New Zealand. Its work will help establish the potential risk factors for various pediatric cancers.

The incidence of childhood cancers has fluctuated at around 17 per 100,000 since 2001, and during the period 1990–2004, death rates from childhood cancers dropped significantly, by 3% per year for leukemias and 1% per year for brain and CNS cancers. Declining mortality reflects better treatment, CDC says.

Fewer deaths mean more survivors. But “survival has a cost,” says the American Childhood Cancer Organization. Current treatments cause severe health effects, including secondary cancers, organ damage, infertility, and cognitive deficits. Research to find kinder treatments is still very much needed.

Compared with rare orphan diseases, cancer is well funded, but not enough money is directed to children’s cancers, say SWF and other similar groups. NCI allocates only 4% of its budget to children’s cancers, they say, and they urge for more funding, not only to find better treatments, but also because research in children’s cancer improves treatments for adult cancers as well. As Kathleen Ruddy, of St. Baldrick’s Foundation, wrote in a blog post: “Chemotherapy and bone marrow transplantation were first developed for children. … Childhood cancer researchers have achieved much for cancer patients of all ages.”

Meanwhile, the Creating Hope Act of 2011 could help the search for new treatments. The law provides incentives for drug companies to develop drugs for children’s diseases, including cancer. But drug companies have yet to take advantage of it to advance cancer treatments for children, according to Jonathan Agin, a blogger at the Huffington Post whose child, Alexis, was diagnosed with cancer when she was two years old.

On YouTube, Gabriella talks about her tumor that was the size of a walnut and how she dealt with her disease metaphorically—by smashing the nut with a frying pan. She was eloquent and brave. One can only imagine the pain she endured from a poem she wrote in July, which we print with permission from her mother, Ellyn Miller.

I closed my eyes & fell asleep. A deep dark sleep.
I dreamt of pain, death, loss, anger.
I kicked & cried & cursed in my sleep. I tried to wake up. I closed my eyes.
I opened them. I would not wake up. No, but I was awake. Wide awake.
I was living the dream. The nightmare.

You taught me about childhood cancers, Gabriella. May you sleep in eternal peace.

Views expressed on this page are those of the author and not necessarily those of ACS.



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