The Hawaiâ€˜i Children’s Cancer Foundation reaches out to families in need.
The last thing a parent ever wants to teach his child is that “a is for apple,” “b is for bear” and “c is for cancer.” but sadly, for many children, learning about the “C-word” at a very young age is a reality. Each year approximately 12,500 children ages 0-20 will be diagnosed with cancer in the United States. Here in Hawaiâ€˜i, an average of 50 to 60 new cases of childhood cancer are diagnosed each year.
“If you relate that back to an average classroom in Hawaiâ€˜i, that can be two classrooms [of children diagnosed with cancer each year],” says Randy Aina, senior vice president at Edward Enterprises, Inc. and immediate past president of Hawaiâ€˜i Children’s Cancer Foundationâ€”a nonprofit organization dedicated to assisting, supporting and advocating the needs of children diagnosed with cancer, their families and the long-term survivors of childhood cancer.
“At any given time, each year we can be supporting up to 100 families and their children,” says Aina, noting that because the length of treatment for childhood cancer may take anywhere from 12 months to three years, as many as 200 keiki may be in treatment at any given time.
“It really becomes a family struggle, especially at that young age,” he says. “Everybody rallies around the child, but it’s the families that really have to pull together and support, too.”
HCCF was formed by a group of parents and medical providers in 1991 after a statewide needs assessment showed there were many childhood cancer needs not being met by any existing entity.
“There was a realization that when kids go through cancer treatments, their families also go through the treatment process with them, and because a lot of the kids are really young, it’s not unusual for one of the parents to reduce their work hours or even quit their job to care for the child. So what happens is, their household income reduces, but their personal bills are still there,” Aina explains.
Today, HCCF remains the only organization in Hawaiâ€˜i whose exclusive focus is serving families and children who are battling cancer, those who have survived and those who live on in memory. The foundation does not receive any federal or state funding; rather, it exists solely through donations and runs on a staff of one part-time employee and a board of volunteer members from throughout the community.
“The beauty behind this is that our overhead is minimal, so that 95 cents out of every dollar donated will go right back to helping a local family, and it all stays in Hawaiâ€˜i,” Aina says. “It could be tens of thousands of dollars that we receive, or it could be $100, it all goes back to helping local families.”
Once a child and his family are in HCCF’s system, they qualify for a wide range of services and programs provided entirely for free, with no expectation of repayment.
“During the first year of treatment, the family can receive up to $4,000 in financial assistance, which can be used toward paying bills or reimbursing expenses not covered by insurance, like housing, utilities and transportation,” Aina says. “Last year we distributed well over $300,000 in financial assistance to local families, and we provide that without any obligation whatsoever. We realize that they’re going through a tough time right now, and if we can help, this is how we choose to do it.”
Other services available to HCCF clients include tutoring programs, support groups, scholarship opportunities and a book reimbursement program for continued educational school supply expenses.
“In some cases, the survivor can get benefits beyond the direct family assistance,” notes Aina, who learned about HCCF shortly after his son, Nicholas, was diagnosed with testicular cancer at the age of 18.
“He went through chemotherapy treatments and successfully beat it, but at the time, he was a student at the University of Hawaiâ€˜i and was paying for his own school expenses,” says Aina. “Th e book reimbursement program helped him, from an educational standpoint, get to where he is today.”
Nicholas, now 30, is a practicing registered nurse at Kapiâ€˜olani Medical Center for Women and Children, where he received all of his cancer treatments.
“My son is just one example, but there are many kids who go on to work in the medical field or find ways to give back,” Aina says.
Like Aina, David Lum first was introduced to HCCF when his son, Ryder, was in the midst of cancer treatments for a brain tumor called germinoma, which caused hydrocephalus (a build up of fluid pressure within the brain), diabetes insipidus and panhypopituitarism, a condition in which the pituitary gland does not produce normal amounts of some of all of its hormones.
“Our family was under tremendous emotional stress as we were going through the initial diagnosis, hospitalization and surgery,” Lum recalls. “We [had] never known or another instance of childhood cancer, and so it felt as if Ryder was the only child in the state that was having to endure this type of ordeal.”
“It was a strange feeling, because I was more aware of my parents’ distress than worried for myself,” remembers Ryder, who was 7 years old at the time of his diagnosis. “I could tell they were stressing out pretty heavily about stuff like work and how they’re gonna make enough money for us to keep getting by and how my dad would be able to keep his job if he had to take care of me.”
“It was when [Ryder] received a small gift basket from HCCF that we began to realize that there must be others in similar circumstances and, more importantly, that there was an organization that provided support to families like ours,” Lum says. “That realization provided us with much comfort when we really needed it.”
According to Ryder, the financialâ€”and emotionalâ€”assistance provided by HCCF took an enormous burden oï¬€his father and mother, Richelle, which in turn allowed him to focus on his health.
“[This help] is important so that the family can still try to keep their lifestyle, and the kid won’t be as scared if the parents aren’t as stressed,” says Ryder. “If the family can keep on going like how they do normally, and if the parents can stay positive, the kid will feel a lot better.”
Now a sophomore at Punahou School, the 15-year-old has been cancer-free for seven years and counting. But even after his cancer treatments ended, Ryder and
his parents continued to receive education and support for dealing with the long-term side effects of his condition and medical procedures, as well as opportunities to network with other local families in similar circumstances.
“One of the most important things our family learned during this ordeal was the awesome capacity for kindness and generosity from people throughout the community,” says Lum, who joined the HCCF board of directors in 2010.
“We have received so much that it is only natural to want to do what we can to give back to the community in a way that is near and dear to our hearts,” he says.
“It almost seems like everybody has been touched by cancer in some form, and I think that makes it easier for people to support who we are,” adds Aina. “You hear stories about families going through and overcoming difficult times, and these are things that I’m hearing of firsthand, and it’s eye-opening. It almost becomes part of who you are; they become a part of your family.
“Our name says everything: Hawaiâ€˜i Children’s Cancer Foundation. Whether or not you’ve experienced it firsthand or indirectly, how can you not want to support kids?”
To learn more about HCCF, including ways to get involved and events scheduled for September, Childhood Cancer Awareness Month, visit www.hccf.org or “like” the foundation on Facebook under the search name “Hawaiâ€˜i Children’s Cancer Foundation.”