Toros Caglar earned a doctorate in theoretical statistics and worked as an economics analyst for a health care company. So, when he couldn’t remember the word, “door,” his wife, Hannah Campbell became concerned.
Other words quickly disappeared from his mind. Then more. Then, suddenly, Toros lost his peripheral vision. Within three weeks, Toros was recovering from surgery following the removal of an aggressive glioblastoma, a rare brain tumor that kills 99 percent of people within 15 months of diagnosis.
Toros survived the surgery and has been partially improving for the last year, but he is not the same. Gone is the rock-climbing intellectual who would toss 6-year-old son, Kaya, on a bike and head out for a weekend of camping. Gone is avid swimmer and super-engaged dad and husband who took care of the family’s finances and knew all the passwords.
Hannah Campbell still has her husband and support from family and friends, but at the end of the day, she’s doing everything on her own.
While Toros received excellent medical care, Hannah said the rest of her family needed help, too. When she searched for resources, she’d find lists of phone numbers. She didn’t need numbers. She needed support.
At Hoag, nurse navigator Lori Berberet, M.S., R.N., told Hannah about Children’s Lives Include Moments of Bravery, or CLIMB, a special support group at Hoag for children ages 6-11 who has a parent or caregiver with cancer.
Hannah describes her experience:
Within the first week of diagnosis, I was thinking, ‘How do we manage this in terms of mental health?’ I’ve never had therapy before. Nobody in our nuclear family has. We have never had to navigate anything like this.
I knew I had to find help, to find coping mechanisms for dealing with heavy things, depressing things, morbid things. What was really great about the CLIMB program is that it normalized the situation. We saw other kids whose parents have cancer and have these struggles.
In our family, and in many of the other families, the patient is the priority. But all family members are suffering in different ways. CLIMB made it easy for me to take those first steps in supporting my kids.
I know my son loved it, because when it came time to go to the sessions, he’d run to put on his shoes. My daughter, Ayla, is 3, so she’s too young, and my son was the youngest person by far in the group. But he did get along well, and he appreciated the other four kids in the program. And he made a strong connection with Marie Miao, the oncology clinical social worker, and the nurse navigator.
While the kids met, the parents met with chaplains who were so helpful. They reiterated that kids are resilient. They need to feel love and stability, but they are resilient. It’s OK to feel scared and upset. We don’t know what the future holds, but we do our best.
I so appreciated that they gave him these tools to understand what was happening and to cope. At one of the CLIMB sessions, they took an old tissue box and helped the kids turn them into dice, with a different coping mechanism on each side. So, when he’s feeling frustrated, he can roll the die and say, ‘I’m going to go to my room to scream,’ or ‘I’m going to take a breath and count to 10.’
We could have figured out ways to deal with this ambiguity on our own, but would we have? CLIMB gave us a moment to take time out, so I could go focus on my son. The physical reminder in the form of dice helps relieve stress and see that it is normal, that everybody has something in their lives that they’re dealing with and that’s OK. That really was the take-home: knowing you have a community that can support you.
Cancer is such a common thing, and yet you feel alone especially in the beginning. I don’t feel alone anymore.