Grantee Invention Eases Stress for Children Battling Leukemia

    • December 6, 2012

Every parent knows the frustration of trying to separate a toddler from a treasured possession. Whether it’s a teddy bear or beloved blanket, the act can prompt a river of tears. But for moms and dads facing the far more wrenching trial of preparing a small child for a traumatic and taxing round of chemotherapy, that frustration can quickly turn to anguish for all parties as the child struggles to hold on to anything that provides a measure of peace.

“My son Martine was diagnosed with leukemia at age 2,” recalls Luz Quiroga, a San Diego-based mom and the coordinator of patient services for the Emilio Nares Foundation, the brainchild of Richard Nares, a 2011 Robert Wood Johnson Foundation (RWJF) Community Health Leader. “We had to go to the hospital every morning, so that medication could be administered through Martine’s Port-A-Cath. One morning, he was wearing his favorite t-shirt. It was green, with a little T-Rex dinosaur picture on it.” Secure with T-Rex by his side, Martine stubbornly refused to let the nurse remove his clothing.  

“He was crying like there was no tomorrow. The nurse was holding him down and I just didn’t know what do. Then I heard Martine say, ‘cut it, cut it!’” Quiroga recalls. “So I cut the shirt so that the nurse could reach the Port-A-Cath. Martine calmed down immediately, but once we got home he said: ‘What am I going to do, my dinosaur is gone?’”

Rather than toss out one of the few things that made it easier for her son to endure his daily routine, Quiroga turned to her sister-in-law, a seamstress. “She repaired the cut in the shirt and added Velcro so that the shirt could be opened just to the left of the heart, over the Port-A-Cath. It was even in the perfect color of green to match T-Rex. That shirt became the one thing that made receiving chemotherapy a little bit easier for Martine.”

With a Child’s Heart

When Martine was first diagnosed, Quiroga had never heard of the Emilio Nares Foundation. “At the time, I was told there was a foundation that would help us with transportation, moral support and anything else we needed—and they did. Richard and his wife Diane even flew to Seattle with us when Martine had a bone marrow transplant to make sure we had enough time to eat and sleep during the procedure.” Quiroga was so inspired by Richard Nares’ work that she became a volunteer and is now an employee of the foundation.

“We lost our son Emilio to leukemia when he was 6,” Richard Nares explains. “Our ordeal gave us a chance to see what other families went through, especially if they did not have significant financial resources or emotional support.” He also has a very deep understanding of the torment and heartbreak felt by small children enduring the seemingly endless tests, treatments and examinations needed to help their bodies battle cancer.

“Those chemotherapy visits were terribly disruptive not only for Martine, but also for my own son and other kids. They have to disrobe. It is often cold and they are already upset and uncomfortable as they are going through chemotherapy. For older children, especially teens, there may be body image issues. They find it embarrassing.” So even though he did not have the funds to do anything with Martine and Luz’s idea at first, Nares never forgot the story of the dinosaur t-shirt, with an opening for a Port-A-Cath, that comforted a frightened little boy.

Improving on a Great Idea

Years passed. Martine’s leukemia was cured by a marrow transplant so he no longer needed T-rex, but Nares continued to search for a donor who could help him create Port-A-Cath-ready t-shirts for other children. Once he found funding for a few hundred shirts, he decided to perfect the design.

“The original shirt was cotton, but the fabric took a long time to dry and it was a breeding ground for bacteria. Our shirt, designed in March of 2011, is made of a breathable, anti-bacterial fabric made from bamboo. We now give the shirts to children here in San Diego at Rady Children’s Hospital. We have given away hundreds so far. Both parents and children love them.” Nares hopes to one day produce the shirt in a wider range of colors, as well as a simple black version for teens.

The Port-A-Cath t-shirt is just one of Nares’ many ways of helping children and their parents cope with the stresses of cancer. While caring for his son Emilio, Nares quickly realized that while medical insurance might cover treatment, it did not compensate families for the many other costs related to care.

“One parent usually has to stop working. And there’s very little public transportation here in San Diego, so there’s the cost of making four or more clinic visits a week. The diagnosis is not just an emotional crisis for people, it’s a financial crisis as well,” says Nares, noting that his foundation helps families make more than 1,500 clinic trips a year, covering more than 35,000 miles. “We hope to eliminate missed appointments for families.”

Nares’ team also provides guidance in navigating the health care system. “We work inside Rady Children’s Hospital. We have a resource center in the oncology clinic for parents and we work closely with the hospital’s social workers. We are an outside agency with a completely bilingual staff and we have lots of time to spend with people because that’s why we are there,” Nares says.

A Gift for Giving

Putting his ingenuity and RWJF Community Health Leader skills to good use, Nares is always coming up with new ways to ease the stress of cancer treatment, along with the financial burden many families face. They include summer camp excursions, donated tickets to the ballet, bereavement counseling and Nares himself running marathons to raise funds. “One of our most successful projects is our knitting, sewing and crocheting class,” he says. “It helps parents pass the long hours spent in the hospital in a relaxing way. But at the end of the year, we hold a fashion show and parents can sell their designs. All yarns and materials are donated, so they are able to earn something for their projects.”

“As a result of participating in the Robert Wood Johnson Foundation Community Health Leaders program, I am even more determined to be an advocate for families whose children are fighting the battle of their lives. Patient needs are tremendous. With the Community Health Leader tools at my disposal, I can focus on vital issues such as the impact of health care reform on our families. Whether it’s knitting classes, transportation or whatever else we can do, our mission is to provide comfort to children with cancer,” Nares adds. “In any way we can, we try to meet even their most basic needs.”

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