Tags: In This Issue, Pediatric Health
As parents, we'd do anything for our children. When our kids are experiencing something painful or traumatic, most parents would agree they'd gladly take on their child's pain.
This is perhaps most true for parents of kids with serious illnesses. Parents are often unsure of what to say to their affected child, how much to tell their other children, what types of emotions are okay to show, and how to cope with the diagnosis themselves.
Rick Chaloupka faced all of the above conflicts when it came to his now-12-year-old son, Kyle. When Kyle was diagnosed with cancer two years ago, Chaloupka says he felt overwhelmed and unprepared:
"Telling your child they have cancer – where's that in the 'Parenting 101' guidebook? Yes, there are lots of books, pamphlets, and websites with information, but there's no time to do your research. Things are moving 1,000 miles an hour starting the minute the diagnosis comes in. It's extremely difficult for a parent to try to explain cancer to your child because you don't know how to explain it to yourself. I tried running through it in my head, but it always ended with me bawling my eyes out wondering, 'How am I going to stay strong for my child?'"
Unfortunately, many parents and families must go through this scenario. According to the National Cancer Institute, approximately 1-2 children out of every 10,000 are affected by cancer, representing over 10,000 kids – and exponentially more parents and families – each year. In other words, a lot of people are affected by childhood cancer; and hopefully, this article will provide some information, advice, and coping strategies for anyone going through this difficult process.
Cancer: Your Child's Perspective
It's important to understand what your child is likely experiencing once cancer has been diagnosed – becuse it's probably not what you'd think. According to Lucy Paskus, a Pediatric Nurse Practitioner at the Children's Center for Cancer and Blood Diseases at Peyton Manning Children's Hospital at St. Vincent, kids are resilient, and generally don't feel sorry for themselves or don't get into the "sick" role once they've been diagnosed.
"You tell them they have cancer and they say 'Okay, what's next?'" she says. "Most kids are concerned about missing their day-to-day activities, like school, or if they can still visit their friends—simple stuff."
Dr. Robert Fallon, a Professor of Pediatrics at the Indiana University School of Medicine, adds that age plays a key role in how children respond to the news. He explains, "a young child tends to focus on the procedures, and what they might perceive to be painful. They just need a playroom, toys, a calming family. Older children want to know if they will get through this, and what it will mean to their life and schedule. Will they miss school and sports? Will their hair fall out?"
Regardless of age, one factor that stays constant is the need for normalcy. Adds Chaloupka, "Just because your child has cancer, doesn't mean they turn in to a piece of fragile crystal. Let them play and be a kid. Their doctors will tell you what they can and can't do and if you aren't sure – ask."
Connecting with Your Child
When it comes to talking to your child, parents should be direct and honest. At Riley Hospital, Licensed Clinical Social Worker (LCSW) Andrew Harner and Licensed Social Worker (LSW) Stacey Koleszar, explain that parents should be as truthful as possible when it comes to talking to their children, while also considering their age. "The depth of information should be determined by their development," say Harner and Kolezar. "Answer the question to the level of understanding, but don't give more information than what they ask for. Always be honest."
In fact, your child likely has an edge when it comes to taking the news. Paskus explains that kids are able to "hang in there" when a lot is being thrown at them. "I don't think I have ever seen a kid cry, even when their parents start crying. They take things one day at a time." And that, she says, is what parents should strive to do.
Additionally, your child's response to the news will be defined by how you respond, says Shamika Morales, a LCSW at Peyton Manning Children's Hospital at St. Vincent. While it's natural for parents to be angry by their child's diagnoses, Morales says they must remain positive. "Parents must maintain the expectations, hopes, and aspirations for their child," she says.
Keeping it together might be easier than you'd think. In fact, Chaloupka says that, despite battling intense emotional turmoil about how to talk to his son, he was able to pull himself together for the important talks. "Somehow that 'magic parent gene' kicked in and I was able to just say it, 'Hey buddy, you have a problem that is making you sick, but everything will be ok and we'll be right here the whole time."
Tips for Family, Siblings, and Friends
Having a strong support system is crucial for families facing a cancer diagnosis, so friends and family should be prepared to help out. For example, having Grandma pick up the siblings from soccer practice, or friends prepare easy meals, can really help out a family who's spending all of their time at a hospital.
From an emotional perspective, simply "being there" can mean so much for parents. Says Chaloupka: "[As a parent] you need to stay as strong as you can for your child -- but remember to let it out. Have friends and family you can count on for one thing: a shoulder to cry on and an ear to bend. Just ten minutes of that will provide so much relief."
In terms of siblings, Chaloupka explains that it's important to get them involved in something proactive, like charity work. That process will give siblings a feeling of control and accomplishment during a time when so little is in their control.
In fact, charity work can prove to be one of the most effective therapeutic and bonding experiences for dealing with a cancer diagnosis. Chaloupka says that, two years after the diagnosis, his whole family has gotten involved in charity work, which has been both a therapeutic and bonding experience. "I felt a need to do something as a thank you for all that everyone did to make sure my child was ok. We may not have all the Bill Gates money to donate, but a couple of hours here and there is priceless."