As your child goes through treatment for pediatric low-grade glioma (pLGG), it will be a tough time for you both. There will be good days and bad. But you can take steps now to create more good days and make the bad ones a little easier.
Give Your Child a Voice
As you prepare for and go through treatment, there will be a ton of information to understand, decisions to make, and details to handle. During that process, don’t forget to include your child.
“So much of what your child is going through is out of their control,” says Bob Casey, PhD, psychologist for the Center for Cancer and Blood Disorders at Children's Hospital Colorado in Aurora, CO. “Whenever your child can feel they have a voice, that gives them a sense that they have some control over what is happening.”
These are ways to give children a voice.
Validate their questions. Throughout the treatment process, kids, just like you, will have a lot of questions. When you don’t know the answers, write them down just like you would your own questions and bring them to the next appointment or include them in your next email to the doctor. You might also ask your child to keep a list of questions for the doctor or to join you in writing the email.
Give them decision-making power. The authority that kids can have depends on their age and the specific situation.
Even very young children can be given choices such as:
- Which arm to receive a shot in
- Whether to sit on a parent’s lap or in a seat on their own during a blood draw
- Which stuffed animal or toy to bring to appointments
- What music they’d like to hear during, for example, radiation therapy
“I had a patient who picked her four favorite songs to play during a 10-minute treatment,” says Erin Shields, a child life specialist in the cancer blood disease unit at Children’s Hospital of Los Angeles. “She knew the words to every song and how long it was, so that was how she marked time.”
Older children, when possible, could have a say in their treatment schedule so they don’t miss social activities. Children’s hospitals have plenty of experience scheduling appointments around proms and football games.
Honor their preferences about information. Preteens and adolescent kids may have varying preferences on how much information they’d like about their condition, treatment, and prognosis. Some adolescents want all the information. They would like to be in the room to participate in conversations with the care team. Others may prefer simply to be told what they need to do.
“If your adolescent, for example, doesn’t want a lot of information because it makes them anxious, then being in the room during discussions with the care team isn’t going to be best for them,” Casey says. “You know your child best, so identify what would be best for them and then confirm it with them so that you give them a voice.”
Acknowledge Their Feelings and Yours
It’s natural to want to hide your fears from your kids and dismiss theirs as well, but whether parents admit it or not, children know when something is wrong. Denying that may ramp up kids’ anxiety and affect whether they believe you about this and other things.
“We have a tendency as grownups to say, ‘Everything’s going to be OK,’” Casey says. “Some parents go so far as to say, ‘You’re not going to relapse,’ but most kids know that the parent can’t guarantee that, so when you say it, you’re minimizing their fear.’”
Instead, respect their feelings and verbalize your own.
You might try dialogue like: “I understand why you feel that way. I feel that way, too.”
Follow that statement up with reassurances based on facts, Casey says. You might say, “I worry, too. But you are getting the best possible treatment, and the doctors are confident it’s going to work, so we are going to keep living our lives and assume everything is going to be OK.”
Children may hide their fears in an attempt to protect their parents. Make sure yours knows that while you share their concerns, you are OK. They don’t need to protect you.
“You can say,” Casey suggests, “I’m feeling sad, scared, or worried today, but I’m OK.”
Tell the Truth
It’s not only important to be honest about your child’s worries and fears – and yours. Be honest about every step of the process from diagnosis through treatment.
If your child asks whether they’ll be getting a shot at their appointment, tell them the truth and follow it up with encouragement. Maybe you can remind them that you will be there holding their hand; that it will be over quickly; or that there will be a treat afterward.
Some parents try to avoid using the words “cancer” or “tumor” at all, but this too can hurt your child’s trust in you and raise anxiety. Children can sense when adults are hiding things from them. Children who can read will see the word “cancer” all over the hospital.
Instead, ask your care team to help you tell your child what’s happening in an age-appropriate way.
“We can figure out simple ways for parents to understand it and then figure out what language they are comfortable using with their kids,” Shields says.
Keep Life as Normal as Possible
There are bound to be days that just aren’t normal. Your child may have hospital stays, medical appointments, or symptoms and side effects that keep them out of school. But as much as possible, keep life normal. Routine makes the world feel predictable and under control.
“Structure and routine are reminders that they are safe,” Shields says.
When you don’t enforce consequences for bad behavior, let them stay out of school more than needed, or give in every time they ask for sweets, kids take notice.
“Kids are so perceptive,” Shields says. “They’re thinking, ‘I’m getting away with a lot. Mom let me have the tablet for an hour-and-a-half. This feels weird and unsafe.’”
There will certainly be days that you’ll agree to ice cream for dinner because it’s the only thing they’ll eat. But as much as possible, stick to the usual routines and boundaries to keep your child feeling secure. Send them to school and extracurriculars when they are well enough. When they miss school, make sure they keep up with assignments. Maintain house rules, such as doing chores, eating vegetables, and going to bed on time.
Stay Social
“Staying in school,” Casey says, “is important not just for the academics, but for the social aspect.”
When your child misses school, it’s important not only to have a plan for them to learn the material and make up the assignments but also to stay connected with their friends.
For younger children, you might contact their teacher to suggest having their classmates send letters. You might set up playdates or visits on the days your child is feeling up to it. When other parents reach out to ask what they can do, rather than accept yet another casserole when your freezer is already full, ask them to bring their child over to play.
Older kids might not welcome their parents’ involvement in their social life, but you can still remind your teenager it’s important. You might say something like, “You haven’t seen your friends in a while. That would be tough for me. I imagine it’s tough on you. Let me know if that’s something I can help with.”
Help Make Meaningful Connections
While kids don’t usually go to traditional support groups, they can benefit a lot from spending time with kids in the same boat. When you see opportunities for these connections, help make them happen. Younger children might meet kids in their situation in the playroom at the hospital. You can help them stay in touch after the hospital stay is over. Older kids might have opportunities to go to events or go on trips with other cancer survivors.
Children’s Hospital Colorado hosts an overnight trip to a baseball game with a hotel stay.
“I’ve heard from countless parents who tell me their kids made really strong connections,” Casey says. “One year, a kid said, ‘These kids get it. My friends at school don’t.’”
Take Care of Yourself
As you usher your child through treatment for pLGG, don’t forget about yourself. You may spend days and nights at the hospital, never even breaking away for a meal.
“Parents just want to be by the bedside every minute,” Casey says, “but they have to take care of themselves not just for their own sake, but for the sake of their child.”
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Bob Casey, PhD, psychologist, Center for Cancer and Blood Disorders, Children’s Hospital Colorado, Aurora, CO.
Erin Shields, certified child life specialist, Cancer Blood Disease Institute, Children’s Hospital Los Angeles, Los Angeles.
