Children's Hospital Colorado

After a Pediatric Leukemia Diagnosis: Frequently Asked Questions

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When a child is diagnosed with leukemia, families go through a gamut of emotions, from grief to fear to depression to guilt. It can be overwhelming. As Bob Casey, PhD, psychologist in the Center for Cancer and Blood Disorders, likes to say, “That's a normal reaction to an abnormal situation.”

Pediatric leukemia is rare, but it's what our team deals with, day in, day out. Here are a few of the most common question they get from families coping with a new diagnosis.

Could I have prevented my child's leukemia?

No. “We really stress that parents did not do anything wrong,” says pediatric nurse care coordinator Virginia Borunda. “There’s nothing you did or didn’t do to cause this.”

In fact, childhood cancers seldom have any cause-and-effect association like the one, say, between smoking and lung cancer in adults. The unfortunate truth, says Lia Gore, MD, Chief of Pediatric Oncology and Hematology at Children's Hospital Colorado, is that, “For the vast majority of pediatric cancers, there's nothing anyone can do to prevent it.”

What caused my child’s leukemia?

The short answer is that there really is no exact answer, but it probably has to do with genetics. Pediatric cancer researchers like Dr. Gore are working toward answers.

“There's been some recent scientific discovery around predisposition to cancer that we’re connecting to certain genetic abnormalities or syndromes,” she says. “But that's still a small portion of pediatric cancers.”

Will my child die of leukemia?

Nobody can say for sure, but the outlook for childhood leukemia is very good. Treatment is well-established and effective, with a cure rate of close to 90%. That means 90% of kids who get leukemia and undergo treatment go on to live cancer-free lives.

What will my child's leukemia treatment look like?

Treatment for childhood leukemia lasts about 2 and a half to 3 years. Chemotherapy is given in phases, and some are more intensive than others. The first 6 to 9 months are generally the hardest, but it usually gets easier after that. In fact, for much of the course of treatment, most people who didn't know your child was undergoing chemotherapy wouldn't even guess they were sick.

That's not to say that it's easy. Leukemia treatment comes with a lot of side effects and interruptions to the family routine.

“We work with families to create monthly calendars, so they can plan for what's coming next,” says pediatric nurse care coordinator Camille Mediavilla. “That way families always know what we're going to do and why and how, and it lets us work around their schedules too. We really try to make life as normal as possible.”

Can my child still go to school and participate in activities during leukemia treatment?

In most cases, yes! Some families worry that participating in school or sports or other activities might put strain on their child and make them sicker, but the reality is that the opposite is true. Staying active makes kids healthy and happy, and that's as true for kids with cancer as kids without, at least in most cases.

During the course of cancer treatment, kids may miss school or activities here and there due to treatment schedules or, sometimes, just because they're not feeling well. They may have to adjust their level of participation in some activities, but they shouldn't bow out entirely. “We want to see kids participating as much as possible,” says Borunda, “and we'll work with families to make that happen.”

How am I supposed to deal with my child's leukemia treatment?

Leukemia is hard on families. Beyond the emotional impact of the leukemia diagnosis itself, there are the hard realities of treatment: the drain on parents' time and attention, the interruption to schedules, the financial demand. Some families have to travel a long way for treatment on a frequent basis. Sometimes kids need to go to the hospital very suddenly, which can affect parents' jobs and careers. And the treatments are expensive.

That's why the Center for Cancer and Blood Disorders' Wellness Program meets families and starts working with them immediately after diagnosis.

“The Wellness Program is designed to help families with the emotional challenges of cancer treatment,” says Dr. Casey. Through it, families work with psychologists and social workers to process their feelings and family dynamics, which are often confusing and complicated.

“We also have family navigators that can connect families to resources to take off some of that overwhelming pressure,” says Dr. Casey. “If they need help with an electric bill or a mortgage payment or even just gas to get to a visit, we can help meet those needs.”

How do I talk to my kids about leukemia?

Some families' first instinct is to try to keep their child's leukemia a secret, to protect them from the fear and anxiety the parent might be feeling. “The problem with that,” says Dr. Casey, “is that it's an impossible secret to keep. Kids are smart. They figure it out and, frequently, they assume the worst. We don't want kids worrying by themselves.”

The best approach, Dr. Casey says, is to be honest and direct in a way that's appropriate for the child’s age. For a 5-year-old, that explanation will be simpler than it will for a 17-year-old, but just as much as it depends on age, it also depends on the kid – how much they want or don't want to know.

“Most parents don't have any experience talking to kids about serious illness,” says Dr. Casey. “We can help with that.”