Easing Burden For Families Of Kids With Cancer

March, 2002 Author: Cleveland Plain Dealer

In a perfect world, Blazine Monaco might have found no burning sense of purpose. But she lives on Earth, where children get cancer and their families struggle with a vast realm of consequences. She has seen it far too many times, as cancer took the lives of her mother, three aunts and a cousin, and it threatened the lives of three other close family members. So when Brittney Flowers, one of her daughter's classmates, died from brain cancer, Monaco felt compelled to offer more than sympathy to families in such dire situations.

She founded The Littlest Heroes, a nonprofit agency focused on improving the quality of life of pediatric cancer patients and their families. "It's been on my mind for years," says Monaco, who's career was in advertising and markering, including 12 years with her own firm, Blazine Advertising. "Brittney just made me want to get going with it."

To launch the agency last April, Monaco arranged for a restaurant meal to be delivered to parents standing vigil in the pediatric oncology ward at Rainbow Babies & Children's Hospital. The meals have continued monthly, solicited by volunteer Sue Flowers, Brittany's mother, and delivered by Metro Lexus drivers. Nearly 400 meals have been served to parents reluctant to leave their children's bedside.

The agency also has provided about 350 phone and gas credit cards for social workers to distribute to needy families with hospitalized children. "We've stumbled upon how much underprivileged families face when a kid is sick, all the single mothers with transportation problems," says Monaco, a Chester Township mother of three, "Giving financial assistance has to be expanded, but gas cars is a good starting place." She relates the story of parents who were given a gas card. "I hear that and I say, "We have so much work to do, particularly for needy families."

The Littlest Heroes also has been able to pass along donated entertainment opportunities to beleaguered families. In one case, a family treated to an Indians game with limousine transportation had not been out socially for two years. The agency recently began to off spa services to patients and their parents, including hand, foot and scalp massage, through 30 spa technician recruited by trustee Rae Bondonyi of Aveda/Fredrics Corp.

Monaco is also looking for patients to be connected to Starbright World, a private online community linking seriously and chronically ill children. The service formerly was offered only to hospitalized children. All software and AOL connections are provided free. When Monaco isn't working on developing agency programs, she tries to meet individual families requests for help. "Sometimes they don't have the energy or resources to take care of things at home," says Monaco, 41. "All those little annoyances of day-to-day living become big problems when you're going through the stress of cancer treatment. "We could easily say, 'that's not our area' but how can we not ease their burden? I can't sleep if I know someone needs something. It gnaws at me."

For example, parents of a child just diagnosed with cancer needed to board the family dog while the child was in treatment. By tapping into her wide network of volunteers and supporters, Monaco found a kennel to board the dog for a nominal fee. In another instance, donations enables the agency to give Christmas presents to several families with sick children.

"It is pretty awesome," says Donna Platek, who arranged for her 4-year-old nephew, a leukemia patient, and his siblings to receive Christmas gifts. The gifts were donated by a 9-year-old Chester Township girl who had dedicated her birthday party to helping The Littlest Heroes. Her party guests brought presents chosen specifically for the sick child and his siblings, ages 2 and 6. They also brought gifts for a soon-to-be sibling. Monaco attended the party to pick up the presents and thank the children. "I never liked networking," Monaco says, "but what one person can do with networking is phenomenal...I used to be leery of asking for donations, but people want to be asked for exactly what you need. People want to do something, and they don't know what to do."

While her days are spent fielding requests, Monaco's sights remain on her original goal, to provide complementary medical services to parents and patients for stress reduction.Monaco is working with the Ursuline Sophia Center to provide guided imagery, art and music therapy, and massage and reiki therapy, and board member Scott Flowers, Brittney's father, is producing educational CDs about the value of alternative-medicine modalities. The CDs will be available to oncology ward parents, who might request the treatment.

"I discovered alternative medicine when Brittney was diagnosed, "says Flowers, a self-employed computer specialist. "It was a whole world I didn't know existed. I want to make it simple for someone to understand its benefits. I want to help families going through what my wife and I went through." Flowers is also working on a teleconferencing program to enable hospitalized children to speak with classmates or out-of-state relatives. A Cleveland Browns Foundation grant is financing the program. The Littlest Heroes is also hoping to provide emotional and spiritual support. Robin Leppla Moore, mother of a pediatric cancer survivor, is making herself available to talk to parents. Her daughter Jenelle, 17, was diagnosed with a malignant brain tumor when she was 14. "There's not a lot of support for parents going through this," says Leppla Moore, a psychiatric nurse at Windsor Hospital in Chagrin Falls. "My main need, even though I had a lot of support from friends and family, was to talk to other mothers going through cancer with their children. That's where I'd like to fit in with Littlest Heroes."

Although Monaco's mission seems to be going in many directions, she's more than comfortable with its broad approach. "It's a little sidetracking, but we feel we're making a difference. There's just so much need...The peace I feel inside is how I know this is what I'm, supposed to do," she says, smiling serenely.