Lighting the Way
The Hawai‘i Children’s Cancer Foundation raises awareness and hope for local cancer patients and survivors.
|HCCF supports cancer patients like Kaela Teho and her mom, Kendis. photo: Jimmy Forrest|
Diane Ono still knocks on wood when she hears the word “cancer.” Nearly 10 years ago, her youngest daughter, Mari, was diagnosed with leukemia at the age of 4. Although intense chemotherapy rid Mari’s body of cancer within three weeks, the memories of her treatment are still fresh in Ono’s mind. “We had no idea what cancer treatment was like for a child,” she recalls. Besides the obvious physical pain, treatment involves weekly treatment visits, hospital stays, late nights, early mornings and every moment in between. “Your life really changes,” Ono says. “It’s very stressful.”
Although several organizations exist nationally and locally to help cancer patients, Hawai‘i Children’s Cancer Foundation (HCCF) is unique among them. The foundation is the only Hawai‘i-based organization providing financial and emotional services specifically to children and their families. Dr. Robert Wilkinson, co-founder of HCCF and Mari’s oncologist, introduced Ono and her family to the foundation.
“My husband and I always looked for a way to help,” Ono says, recalling the situations of several families they came into contact with during Mari’s treatment. Ono quickly became involved, joining the board and becoming the president of HCCF in 2004. “To have babies or young children, who have their whole lives ahead of them, diagnosed with such a devastating disease is very tragic and traumatic,” she says.
For leukemia, the most common type of childhood cancer, chemotherapy lasts about two and a half years. “Your child is bombarded by a cocktail of chemotherapy drugs,” Ono says, recalling the daily chemo pills, weekly blood tests, monthly intravenous chemo and a spinal tap once every three months. “We just tried to live each day and be happy. Not show our fear for Mari,” Ono says.
Besides the emotional and personal strain on a family, cancer also creates a financial strain. Often when a child is diagnosed, one parent has to quit his or her job to be present during treatments and doctor visits. This is the biggest part of the financial burden, which, in total, HCCF estimates consumes an average of 53 percent of a family’s income. “It’s often the two-working-parent families that are hit the hardest, because they have mortgage payments and other financial obligations,” Ono says. At times, she says, the stresses can push families to the breaking point.
HCCF strives to keep families together with financial and emotional support. During the first year a child is diagnosed, a family can apply for up to $3,000 in financial assistance for the year, regardless of income. In the second year, assistance is offered up to $1,500. Cancer survivors can also apply for scholarships to help them through college. “It’s not a perfect solution by any stretch,” Ono says, as the financial burden of cancer lingers for years.
When Ono met Kendis Teho in 2005, she offered a different kind of help. Teho’s 4-year-old daughter, Kaela, was diagnosed with the same type of cancer as Mari. “I asked Diane a lot of questions,” Teho recalls. “How to deal with it, where to look for help.”
As Kaela undergoes her treatment, which will continue until the fall of 2007, she can talk to Mari, her “big sister,” about the different medications she’s given and the recovery process. “They have something in common with each other that nobody else does,” Teho says. The first time they met, “they sat on the playground, compared notes.” With several doctors on the HCCF board, newly diagnosed families are able to contact patients or parents in similar situations. “It’s nice to have an organization that brings people together,” Teho says.
HCCF also helps patients on a long-term basis by fostering a relationship with a cognitive remediation program in Oregon. As more children are diagnosed with cancer—about 60 each year locally—more will be exposed to the harsh chemotherapy treatment. Unfortunately, the medication that kills off the disease is also a source of life-long challenges, including inattention problems, Ono says. Once funding is approved, the program will identify the learning problems in each patient and work with schools to make the proper accommodations.
HCCF will host an event on Sept. 10 at the Honolulu Zoo to raise public awareness. “It is with broadbased awareness,” Ono says, “that donors and companies are willing to support HCCF.” “I was totally unaware of childhood cancer until my own daughter was diagnosed,” Ono says. “It can happen to anybody.”
Making a Difference is presented in partnership with Hawai‘i Community Foundation, a statewide grant-making organization supported by generous individuals, families and businesses to benefit Hawai‘i’s people. For information: www.hawaiicommunityfoundation.org.