Courtney's Courage expands services to families with children fighting cancer

Tee Up For Tots has outgrown its name.

Started 18 years ago as a golf tournament with a vision to raise funds for pediatric cancer research, the nonprofit has continually expanded to include family support services for children battling cancer and their families.

To reflect that evolution — and to continue to honor the memory of Courtney Zillman, who inspired the tournament after she lost her battle against neuroblastoma at age 4 — the organization has changed its name to Courtney’s Courage.

“With the support of the Tucson community and tournament sponsors, we have been able to expand our mission to fit the needs of patients and families being treated at Diamond Children’s. We have really stepped up our impact for these families,” said Kathy Zillman-Ogden, Courtney’s mother and the administrator for the nonprofit.

Annually, about 100 families benefit from the Courtney’s Courage family support programs, which offers a variety of support and financial assistance with groceries, rent, gas, utilities, insurance and other vital needs. The assistance, which is provided for families of children with any type of cancer, is designed to fill immediate or emergency needs identified by social workers.

Zillman-Ogden said it can be a blessing for families struggling with a cancer diagnosis that has suddenly changed the trajectory of their lives.

“Often families hesitate to ask for help and are unaware of any resources. They are just moving along in life in middle America and something like this usually takes the mom or one parent out of the workforce since they need to be with the sick child full time. It can be financially devastating,” she said.

Jerry Miron, a member of the board of directors who has been involved with the organization since its inception, said the program, which has funded everything from food cards and new refrigerators to car repair bills, is vital to families in crisis.

“It is more than just financial support, since it allows the parents to better focus on their children with cancer and their families,” Miron said.

Other services that have developed as a result of patient need are newly-established parent support groups; Courtney’s Courage is also partnering with Candlelighters of Southern Arizona to offer teen and young adult support groups that provide activities for siblings of pediatric cancer patients.

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Additionally, new in-hospital sibling events for children of all ages offer art therapy projects and other opportunities for members of pediatric cancer families to bond with others.

“Siblings often feel left out because parents, through no fault of their own, must focus so much attention on the sick child. The kids can chat and interact and work on projects and enjoy time with other siblings,” said Zillman-Ogden.

Courtney’s Courage is also offering Momcology Dinners to give mothers of pediatric cancer patients a chance to socialize outside of the hospital and share helpful tips and insight.

“We take 12 moms out and treat them to dinner and they have the opportunity to connect with other moms and support each other. One mom may be struggling to get her child to take medication or may be concerned about its side effects and other moms can jump in and say what has worked for them,” Zillman-Ogden said. “We have had so much positive feedback from moms who are so thankful to talk with others in the same situation and from the social workers who have seen the families interacting more in clinic.”

Overall, Zillman-Ogden also hopes that Courtney’s Courage can help bring awareness to the great burdens that many families bear during cancer crises.

“I call these the ‘back stories.’ What people don’t see is the other situations in the background for families dealing with cancer. As if cancer isn’t more than enough for anyone to have on their plate, it is the other things as well: They have had to leave their jobs, which creates a huge financial burden even for financially solvent families; they have other children who are struggling ... these families must be strong advocates for their children through all of it and I am in awe of them,” she said.

With its continually expanding efforts, Courtney’s Courage remains true to its research roots.

Since inception, it has funneled almost $700,000 into pediatric cancer research at UA Steele Children’s Research Center and Zillman-Ogden is proud that all of the money raised in Tucson stays in the community. Research is currently focused primarily on immunotherapy and haploidentical stem-cell transplants.

“Courtney would be 21 on Aug. 31 and her legacy lives on through what we are doing for other families. I know she would be really proud of what Courtney’s Courage has done, but until a cure is found we will have families going through this. That is why we have a two-part mission for assistance and research and we fully support both,” she said.