Battling Neuroblastoma: kids helping kids

When my oldest daughter was 9, we went to see “A Bridge to Terabithia”. I was not prepared for the unexpectedly sad ending, nor was my daughter. The main character Leslie dying was a shock to most of the theater, in fact.

Worrying that perhaps I made a poor choice in thematic content, I was surprised when she remarked: “Mama, Jess will be just fine. He’ll have Leslie’s handprint on his heart.” (She was referring to the song “For Good” in Wicked when Elfaba sings to Glinda reminding Glinda that she’ll carry her friendship on her heart always, like a handprint.) Clearly she handled the movie just fine and it was my insecurities that were the problem. Art provides an emotional training ground, if we allow it to. Besides, how will our kids ever learn to face the bitter moments of life if we never allow them to?

Allow me to introduce you to some children who tapped into their own resiliency and creativity to help others suffering from pediatric cancer.

A Flip of a Coin

Explaining why a child gets cancer is as easy as a predicting the outcome of a flip of a coin but changing the odds and finding a cure may be as simple as saving coins. That was the realization Jon and Greg Maher, teenagers from Libertyville, Illinois, had when their 3-year-old cousin, Dawson, was diagnosed with neuroblastoma*. They realized how little was known about the third most common pediatric cancer that has an abysmal 30 percent survival rate.

Their Web site,, was founded under the premise of “Taking on Childhood Cancer One Penny At A Time.” Barely a year old, and now part of the 5013c organization the Children’s neuroblastoma Cancer Foundation, the site have raised over $30,000 through mostly online programs.

While is a charity, the focus is always on the kids with a page dedicated to children warriors and angels.

Ellen Hanson, a Massachusetts mom whose 4-year-old son, Sean, has neuroblastoma, is involved with a few neuroblastoma charities such as Alex’s Lemonade and www.coins4kids.organd says it is important to be involved, create awareness and do what you can to battle a common beast.

Ellen’s other children have found great comfort with being involved with such charities.

When her 8-year-old son Scott decided to do something to help the battle against neuroblastoma., he created “Sean’s Troops” – little army men that can blast away the cancer. He puts them in a candy bowl at the nurse’s station for kids to take if they are too sick to eat a piece of candy.

The Parents

A strong parent network within the neuroblastoma community has helped many families regain their footing after the initial shock of the diagnosis.

Many parents, such as Ellen, become very involved in advocacy and pushing for funding for more research and treatment. It comes from a sense of not wanting other kids to ever endure what their kids have to. “We all feel we have to do something because the kids don’t have the time…the kids are truly running out of time.”

Ellen saw a need for a Web site to help newly diagnosed parents so she made one., her site has all the information a family whose child just received a diagnosis of neuroblastoma needs from “it is truly OK to freak out” to “here is where you can go to get medical care all over the country.” She saw a gap and filled it. And, tomorrow someone else will see a gap and fill that.

“The Younger, The Better”

Kids by nature are altruistic, especially towards each other but they have to be taught how to apply that drive. We can foster that by showing them how to give by our own charitable efforts during the holiday season, and all year long. “Learning to give is the only way to foster a realization of what is happening in the world,” noted Deb Maher, Jon and Greg’s mother. That is the goal, isn’t it? To raise our kids to be aware so they can hear the cry of help from others.

I can guarantee I won’t be so quick to worry about tough emotional content in movies any more. I’d like to think that emotional practice will come in handy in the real world some day – “for good.”

*Understanding Neuroblastoma

  • Third most common childhood cancer = 8 percent of all cancers
  • 30 percent survival rate; 15 percent of all cancer deathsA solid cancer, meaning it forms a tumor, and is of cells from the sympathetic nervous system.  It usually starts in the adrenal glands near the kidneys but not always. Typical age at diagnosis: 2; most kids diagnosed before age 5
  • Treatment: Combo of surgery and chemotherapy and dependent on the stage and grade of the tumor

The Silver Lining: Due to parent advocacy and kid-driven charities, more research dollars are being spent on neuroblastoma and promising treatments are in development improving outcomes.

*Neuroblastoma Resources, Advocacy and Charities

The following Web sites are Dr. Gwenn’s recommendations for neuroblastoma resources and for charities to consider giving to to help this important cause:

Alex’s Lemonade

Children’s Neuroblastoma Cancer Foundation


The Loneliest Hour (particularly great for new diagnoses)

(Originally posted November 2007; Updated December 2009)

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