With a doctorate in statistics and a job as an economics analyst for a healthcare company, Toros Caglar possesses above-average intelligence.
That’s why it made little sense when, a little more than a year ago, he started struggling to come up with simple words. The kind used in everyday conversation.
Then his peripheral vision diminished.
What was going on? He was relatively young at 35, fit and an energetic father of two young children.
On Sept. 7, 2017, Caglar was diagnosed with glioblastoma, the same aggressive brain cancer that recently claimed Sen. John McCain.
“It just hit us like a ton of bricks,” said Hannah Campbell, Caglar’s 41-year old wife, who was tasked with explaining to the couple’s son, Kaya, then 6, and daughter, Ayla, then 3, why their father could no longer take them camping, go bike riding or toss them in the air.
“When you have a diagnosis like this, it’s not just the patient, it’s the family,” Campbell said. “My son started having tantrums … more than you would normally expect. He was getting angry when he didn’t need to be angry.
“I was really overwhelmed as a parent and as a caregiver. I’d never seen a therapist in my life, but I knew immediately that we’ve got to get support for us to understand these issues, for us to process this stuff.”
Campbell was told about CLIMB, a new program at Hoag Hospital Irvine.
Hoag developed Children’s Lives Include Moments of Bravery to provide children of cancer patients with the tools to navigate their emotions through a confusing and angst-producing time.
Campbell enrolled Kaya, who is now 7.
“I was hopeful,” Campbell recalled. “I was worried about my son.”
Now 4, sister Ayla is too young for the program.
Under the guidance of a social worker, CLIMB provides children ages 7 to 12 with direct answers to tough questions, while helping youngsters process the array of emotions when they learn a parent has a serious and sometimes fatal disease.
“For the kids to attend, they need to know that the parent has cancer,” said palliative care social worker Marie Miao, who conducts CLIMB at Hoag. “I think when we hide things from them, their mind goes to the worst-case scenario, so the goal of this program is to give them the facts about cancer, what cancer is and cancer isn’t.”
Through CLIMB, children and parents meet for group sessions at Hoag Irvine one evening a week over six weeks.
Each session begins with a group meal before the children are left with Miao and a nurse.
Parents meet concurrently, touching on the same topics, to assist them in building communication skills.
In each session, children learn about a different emotion — and that any emotion they are feeling is OK.
“They need to know that they are not to blame, and that they are not responsible for other people’s feelings,” Miao said. “So if someone else isn’t feeling well, it is not their fault.”
At one CLIMB session, children turned old tissue boxes into dice, with a different coping mechanism on each side.
So when a child is feeling frustrated, they can roll the dice and say, “I’m going to go to my room to scream,” or “I’m going to take a breath and count to 10.”
Children also get a tour of Hoag’s cancer infusion center, where radiation treatment takes place. The youngsters get to see medical personnel working — and it becomes less of a scary place.
Five children attended the first CLIMB session.
The feedback has been positive, said Miao, who hopes to do some follow-up meetings with the children and parents to see how they are coping.
For Caglar, the prognosis is not good, Campbell said.
Her husband may be in the final stages.
The family is hopeful, but realistic.
“When Kaya can understand the facts, he feels like he is more in control and less like he has to get angry,” Campbell said. “(CLIMB) made me feel less vulnerable. It gave me a feeling of empowerment to help Kaya when he is upset about things. It was really a good jump start.”
