Children with cancer, Part 1: How family members and friends can help

June 23, 2014 | by

John Cloer became a teenager in May, an ordinary rite of passage made extraordinary because he is a cancer survivor – one of an estimated 370,000 pediatric cancer survivors in the U.S.

Childhood cancer patient John Cloer

The parents of John Cloer, now a childhood cancer survivor, learned many lessons during his treatment for leukemia. Photo courtesy of the Cloer family.

He was three months shy of his third birthday in 2004 when what his parents Bill and Gina Cloer assumed was the flu was diagnosed as acute lymphoblastic leukemia. For the next three and a half years, John received chemotherapy – eventually leading to his long-term remission.

John finally became well enough to attend kindergarten and enjoy normal pursuits like T-ball. In fact, his perseverance (from staying late to practice, to reveling in teammates’ progress) earned the 6-year-old an invitation to play T-ball on the White House lawn and meet President George Bush. He has long raised awareness for City of Hope, from presenting an award to singer Miley Cyrus to riding on the hospital’s 2014 Tournament of Roses float as his sister Heather, a City of Hope nurse, walked alongside.

When John was embarking on cancer treatment, Bill and Gina were given well-tested roadmaps from oncologists adept at keeping children alive. On the comparatively uncharted path of cancer survivorship, they have longed for a similar roadmap. Along with regular follow-up visits with doctors such as Clarke Anderson, M.D., the Cloers are being helped in their survivorship journey by City of Hope’s Childhood Cancer Survivorship Program, led by Smita Bhatia, M.D., M.P.H., the Ruth Ziegler Chair in Populations Sciences, and nurse practitioner Karla Wilson, M.S.N., R.N.

In this program, John and his family receive a comprehensive medical summary of his diagnosis and treatment, as well as an individualized review of his potential late-effects from treatment.

Bill, Gina, John and his younger brother, Steve, recently sat down around their dining room table and offered some advice to parents of children with cancer, along with well-meaning family and friends.

In this first of a three-part series, they answer the question:

What can family/friends do to help parents whose children have cancer?

**

1. Try to be a comforting presence. “Don’t try to give advice or say the right thing; just listen to the family, and keep your comments to a minimum,” advised Gina. She still recalls a particular insensitive comment made by a nonclergy member of her church.

John Cloer in the Rose Parade

John Cloer was one of the survivors on City of Hope's 2014 Rose Parade float.

“I told him ... I had just been reading "A Purpose Driven Life" and was on the page about when tragedy strikes and how you respond to it, and he goes, ‘Well, hold on now. This isn’t really a tragedy.’

He wasn’t saying it from a religious perspective, like ‘God is with you,’” she said with a laugh. “He was like, ‘It’s not that bad,’ like I was overstating it, like we didn’t really meet the criteria.”

2. Do something kind. Don’t wait for families to give you something specific to do or ask you for help, Gina said. “Don’t call and say, ‘What do you need?’ Don’t expect people to be able to organize their thoughts.”

Instead, drop off a bag of groceries, or maybe a Trader’s Joe gift card or a prepackaged meal they can freeze for later. “Do what you would like somebody to do,” she said. Yet avoid dropping by for unexpected visits when families are preoccupied with saving their child, she added.

3. Don’t forget about siblings. “People want to give attention to a sick kid, which makes sense, but it’s really a bigger help if they help with siblings who aren’t sick,” Gina said. “It’s really challenging for parents waiting for appointments that last hours or if their kids are inpatients. Either way, siblings can’t just be stacked in a corner.”

Added Bill, “Friends and relatives should make sure they spend time with siblings and take them out of the environment awhile and do something special for them.”

4. Observe precautions inside the hospital and out. If you're not feeling well, stay away from immune-compromised children and their families. If you visit, follow posted guidelines and don’t make already-overwhelmed parents police your infection precautions.

Gina remembers being aghast when one visitor sat cross-legged on John’s bed, and another touched John without washing his hands. “You can actually kill someone by not washing your hands when they’re in a compromised state,” said Gina. “Don’t treat that as a paranoia that overcomes a family,” she said. “It’s a real thing.”

Coming soon:

Part 2: How parents can help their kids

Part 3: How to transition from patient to survivor

**

Learn more about acute lymphoblastic leukemia treatment at City of Hope, internationally recognized for its treatment of leukemia and other blood disorders.