Superhero Kids: Raising the Quality of Life

The high cost of medical care has been a major issue for years, but the cost of cancer care has become unmanageable even for the insured.

In February 2013, a pair of Duke researchers proposed the addition of a new adverse event in cancer treatment:

Out-of-pocket expenses might have such an impact on the cancer experience as to warrant a new term: "financial toxicity." Out-of-pocket expenses related to treatment are akin to physical toxicity, in that costs can diminish quality of life …[1]

In May, Fred Hutchinson researchers reported on the "strong evidence of a link between cancer diagnosis and increased risk of bankruptcy … [It] represents an extreme manifestation of what is probably a larger picture of economic hardship for cancer patients." [2]

Many of the young patients seen at the Children's Blood and Cancer Center (CBCC) at Dell Children's Hospital in Austin, Texas, require as many as two or three years of treatment. That's two or three years' worth of appointments, driving, parking, eating, office co-payments, bills, rent, utilities, maintenance, stress, worry, fear, guilt, out-of-pocket medical expenses and much more. The subsequent emotional, financial, psycho-social and physical burden carried by these families simply defies hyperbole.

"Listening to the parents talking about the difficulties they face, we were just floored," says Samia Joseph who, along with her husband John, is a long-time CBCC volunteer. "Even in basic cost-of-living expenses, in two-parent homes one parent may have to stop working and assume the role of primary caregiver, which is a full-time job. In single-parent homes, it can be just devastating."

The quality of life

In 2009, the couple decided that there was something more they could do to help.

"That year my husband and I started out just by asking friends of ours, 'Would you be interested in donating a little money to help these families?' And we raised about $85,000 that first year."

They called their project Superhero Kids because they were so inspired by the enduring and unflinching bravery of the CBCC's patients, but their actual goal was decidedly practical, if not a bit prosaic by comparison.

"From the beginning, the mission of Superhero Kids has been to improve the quality of life for these kids and their families. One hundred percent of the money we raise goes directly to meet those needs."

"The way it works is, the social workers at the CBCC identify the needs, and we pretty much give them carte blanche in how they allocate the money we raise."

Serving as one of the primary fundraisers for the CBCC does not entitle Superhero Kids access to a child's medical records, or to the details of a family's financial hardships - nor are they asking for that information.

"They send us quarterly reports detailing all of the expenses. We know where the money is going, but don't know who the money is going to."

I asked Samia for examples of how the donations raised by Superhero Kids have been used to help the kids and their families at the CBCC. She said the donations have covered the cost of:

• Rent payments
• House payments
• Car payments
• Hospital parking fees
• Pots and pans for a family who had just relocated to the area
• Hospital cafeteria lunch coupons
• Wigs for kids who lost their hair to chemotherapy
• A prosthesis for a child who lost a limb to cancer
• Home repairs, like getting a broken air conditioner fixed
• Groceries
• Back-to-school backpacks and other school supplies
• Clothes
• Beds
• Exterminator services

Donations to Superhero Kids are also used for end-of-life care and to cover the burial expenses of children whose families can't afford them. "Yes," says Samia in a tone of voice that is more resolute than resigned. "We've helped fund more than one funeral."

In the past, there were organizations that the CBCC could appeal to for needed funds, but with Superhero Kids they no longer need to call around to those other organizations, which may be in Dallas or even further away.

"We've also gotten some local businesses involved, so now the social workers have contacts, people they can trust," she says. "It's not that these businesses will give us a discount, it's that they will go and immediately take care of whatever needs taking care of. The CBCC can comfortably send them to this family's home to do whatever work is needed, and the family doesn't need to worry about 'who is this person?'"

Superhero events

Superhero Kids also conducts fundraisers and sponsors events for the CBCC, which include:

Survivorship Challenge

Superhero Kids is sponsoring the 8-week Survivorship Challenge, which "reintroduces being active and physical to children and teens who have become inactive due to their cancer and/or treatment." The program, designed for full family participation, culminates in the "Formula Run Supporting the Children's Blood and Cancer Center" on November 3rd at The Circuit of the Americas. (Sponsorships are currently being accepted.)

Austin Marathon

Superhero Kids volunteers raise money and run in the Livestrong Austin Marathon, Half Marathon and Paramount 5K, while other volunteers man the water stop and cheer on the runners.

Camp Rocky Ridge

Every summer, the organization sponsors a weekend trip to Camp Rocky Ridge for teen patients and staff. This trip gives the kids the opportunity to have a great summer camp experience while meeting other patients who are on or off treatment.

Scholarships

Superhero Kids awards college scholarships each year to graduating seniors who meet specific criteria.

Unsung heroes of superhero kids

Neither Samia nor John has any direct connection to pediatric cancer or other childhood illnesses, which makes their enormous contribution that much more sincere and extraordinary. And they aren't alone. Some other people without any personal connection to the cause have stepped up to support Superhero Kids and the Children's Blood and Cancer Center.

Chuck Hemann

Currently the director of analytics for WCG, a global PR and communications agency, Hemann co-authored a book entitled Digital Marketing Analytics, available at Amazon and Barnes & Noble, and donates his share of the proceeds to Superhero Kids.

John Borek

Borek, owner of Autocraft Bodywerks, bought a 1985 Corvette C4, cut it in half and completely refurbished it into a fully functional Batmobile with mounted machine guns that, thanks to propane and oxygen, actually simulate firing. He brings the Batmobile to CBCC events, inspiring jaw-dropping awe from kids and parents alike. His next goal is to enable the kids who are unable to go outside and ride in the Batmobile to be able to operate parts of it with an iPad.

<3>Teagan Boyd

Teagan is an 8-year-old girl who is not a patient at the CBCC or Dell Children's Hospital. Over the past three years this particular superhero has raised over $10,000 for Superhero Kids. In doing so she has requested contributions instead of birthday gifts, inspiring the likes of Austin philanthropist Milton Verret to match her funds dollar for dollar.

The spirit of Superhero Kids

"You meet those kids just once, and you're so inspired by them, by the way they keep fighting and fighting," says Samia, whose genuine enthusiasm for the work done at the CBCC, for the staff and of course for those patients, comes across in person and over the phone like the underwriting spirit of Superhero Kids. "No matter what you do, you always want to do more."

If you are interested in donating to Superhero Kids, you can do so by clicking here, which takes you to the Superhero Kids donation page at the Austin Community Foundation, a 501(c)(3) tax-exempt organization and the current administrator of the fund.

You can also visit Superhero Kids at their homepage, "like" them on Facebook and follow them on Twitter.

Photo credits: Elizabete Silva (Batmobile, marathon, and scholarship pictures); Frank Skowronski (superhero kids pictures)

End Notes:

• 1. Zafar SY, Abernethy AP. Financial toxicity, Part I: a new name for a growing problem. Oncology (Williston Park). 2013 Feb;27(2):80-1, 149.
• 2. Ramset S et al. Washington State cancer patients found to be at greater risk for bankruptcy than people without a cancer diagnosis. Health Aff (Millwood). 2013 Jun;32(6):1143-52. doi: 10.1377/hlthaff.2012.1263. Epub 2013 May 15.

This is the sixth installment in my series on the Children's Blood and Cancer Center at Dell Children's Hospital in Austin, Texas. The first five are listed below:

• Introduction: Uncommonly Ordinary
• Part I: Not Your Average Prom
• Part II: Teenage Cancer: One Girl's Story
• Part III: A Food Fight for Life
• Part IV: Clowning Achievement