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What It’s Like to Parent a Child With Cancer

A guide for parents and supporters of families coping with a childhood cancer diagnosis.

This story was produced in partnership with Northwestern Mutual Foundation, committed to accelerating the search for a cure to childhood cancer while supporting families undergoing treatment and survivors suffering from late effects.

When a child is diagnosed with cancer, their childhood is upended in a split second, as their treatment becomes the number-one priority. While their classmates, cousins, and kids in the neighborhood get to keep playing soccer on Sunday, going to the beach with the grandparents, and having sleepovers, these children’s days are suddenly filled with doctors’ visits, tests, and therapies; they often must spend more nights in a hospital bed than in their own. Experiencing so much change so fast can shock and scare children, especially those who are too young to fully comprehend what is happening to them.

But childhood cancer affects more than just the patient. This diagnosis is one of the most gut-wrenching things a parent could ever hear, and the journey that follows impacts the entire family — siblings especially, but also grandparents, uncles and aunts, cousins, and close friends. For parents, the logistics involved in supporting a child through treatment can be taxing enough, but the emotional toll childhood cancer takes on them, their other children, and those closest to them is tremendous.

According to the National Cancer Institute, nearly 16,000 U.S. families each year have their worlds flipped upside-down in this way, as their child is diagnosed with cancer. This means that every day, several thousands of parents nationwide are striving to be the best dads and moms they can be while also navigating this new and uncharted territory. Facing childhood cancer for the first time, they don’t always know how best to support their child while also allowing them to just be a kid. At the same time, relatives and friends don’t always know how best to help these families.

When faced with such difficult circumstances, it helps to have guidance from experts and parents who have gone through this before. While each family and situation is unique, this collective wisdom can empower parents to handle the tough stuff and continue, with the support of others, raising amazing kids. Nobody will say this journey is easy, because it’s not, but having this guidance can enable those affected by childhood cancer to find a bit of hope and realize they are not alone in this fight.

Telling Kids the Truth

Hearing the initial diagnosis is oftentimes shocking, always overwhelming, and most certainly devastating for parents. And just as they are trying to sort through their own emotions and contemplate next steps, they wonder: How in the world am I going to explain this to my child?

This conversation will be difficult to have — and it may be tempting to avoid or to sugarcoat in order to shield the child from the scary reality — experts and parents alike insist that it’s critical to talk openly and honestly with kids about their cancer, treatments, and how their lives will change. Of course, the child’s age and capacity to understand will dictate how much detail is shared. Regardless, parents should always try to provide accurate information and answer questions honestly and calmly, as children of all ages take cues from their parents’ tone of voice and facial expressions.

“The first time Rafael got cancer he was 3 years and 8 months old, so I explained to him that he was sick and that medicine would help him,” says Irma Moreno, whose son was diagnosed with acute lymphoblastic leukemia in 2012, then bone cancer in 2016, and leukemia for a second time in 2017. “I would always tell Rafael the truth and answer his questions as best as possible.”

Because Rafael was so young when he first got cancer, Moreno says he was not involved in any treatment decisions at that time. “But when he relapsed at 7 and then 8 years old, he would ask about everything regarding his health and medicines,” she notes. “Now Rafael asks his doctor about any information he wants to know, and I am fine with him knowing everything. I think it is very empowering for children to know about their treatment because it helps them understand their condition. Otherwise, they feel very curious and scared.”

For parents who struggle to talk with their kids about the disease or the potential outcomes, Moreno recommends involving a certified child life specialist. These are healthcare providers who’ve been trained to help families cope with the impacts of illness. Psychologists, social workers, and even a child’s doctor and nurses can also assist in tricky discussions.

 

It Takes a Village: 3 Things Relatives and Friends Should Do to Help
Sometimes it’s harder to know what to do when a friend or relative’s child has cancer than if you’re experiencing it yourself. Here are some places to start.

  1. Help the child live as normal a life as they can. Talk to the parents about hosting playdates that set them at ease (thanks to hand sanitizer and taking care of other medical preparations). Invite the kids, through their parents, to social gatherings and neighborhood functions while also offering help to get them there and find a safe spot to have fun.
  2. Help with fundraising. Cancer is a financial burden. Ask permission first, then take it upon yourself to reach out to friends and others to set up a page for funds to help pay for everything from groceries to cancer treatments.
  3. Reach out, as often as you can. Email, text, call, show up to their house with some groceries — whatever you do, let them know you’re there and don’t make it about you.

Asking Others for Help

Parents raising children affected by cancer can feel alone. This is a product of their heightened state (when a child has a terminal illness, every moment becomes precious) as well as the stress of diving into tasks that are new to them. Doctors’ visits, treatment sessions, and hospital stays consume time and energy, not to mention the hours upon hours of research and painful decision-making.

This is why it is so valuable for parents to build a robust support network. Research from the National Cancer Institute shows that receiving help from others — for both logistical and emotional needs — strengthens and encourages not only the parents but also the child with cancer and their siblings.

At first, most parents find it difficult to ask for assistance — it can be awkward, it’s hard to figure out what to ask for, and the asking itself is time-consuming. But it’s crucial: Communicating regularly, openly, and honestly with friends, relatives, neighbors, and others in a circle can alleviate stress, sadness, and being stretched too thin. Along with keeping them updated on a child’s progress, continuous communication gives those outside the immediate family ideas for how to help, whether it’s by cooking meals for the family, transporting other kids to their activities, pitching in on yardwork, grocery shopping, or even just lending an ear.

“My support during this journey has been my family, even though they live in Texas,” says Moreno, who lives near Omaha, Nebraska. “The hospital doctors and nurses and child life [specialists] are also very supportive. I think the hospital staff really tries to understand our needs as much as possible to help us.”

Experts also recommend joining a support group, either in person or online, and connecting with other parents of kids with cancer. There is likely benefit from seeing a therapist or other mental health professional who can help process complex emotions; this could be a good option for other kids as well.

Just as parents fare better with a support system, so too will the child who has cancer. “Rafael connected with friends at the hospital, mostly kids in treatment,” Moreno says. “I think that kids in the hospital understand each other very well because they know what it’s like to be going through hard stuff.”

Finding Normalcy in a Surreal Time 

As soon as a parent receives a childhood cancer diagnosis, everything changes. Schedules and routines are upended, stress runs high, emotions seesaw, finances may be tight, and family activities and socializing may be limited due to the child’s weakened immune system.

“We as a family couldn’t go to parties or church when Rafael’s immune system was low,” Moreno says. “One of the hardest things for him was not attending a school or going on field trips with his classmates — he was so sad not going to school.” Constantly worrying about catching a virus can be hard on kids, Moreno adds, as they know that contracting one could land them in the hospital yet again.

But, for better or worse, this is all part of the family’s new normal — and embracing it and working within is healthier for everyone than resisting it. “Accepting that your life has changed is very important,” Moreno says. “Your old normal is gone forever and there is no going back. But focusing on living with your new normal is possible — it’s the best you can do.”

Within this new normal, experts recommend keeping as many things the same as possible, even amid all the changes. For instance, when it comes to parenting style, the ACS suggests maintaining the same expectations for the child, such as wanting them to say “please” and “thank you” or to put their toys away if they’re able, rather than changing the rules just because they have cancer. It’s also important to encourage playtime and fun activities, as appropriate, which can help them feel like a regular kid and get their mind off being sick. It’s key to keep them connected with their friends as much as possible so they won’t feel too isolated, especially if they are unable to attend school for a while.

“I think it is very important for Rafael to engage in his usual activities because it makes him happy and still feel like all the other kids,” Moreno says. “He knows he has been sick, but he can still enjoy life as a kid. I tell other parents going through hard times: Don’t let your kids feel alone or different. Even if you don’t like to visit other people, let your kids see their friends.”

Finding balance and comfort within this new world can be challenging, but it’s important for the whole family to try. “For our family to maintain a new normal, we keep doing the same things as before — just maybe in a different way, like going to the park instead of the cinema or Walmart,” Moreno says. “Taking the kids to visit friends and bringing hand sanitizer everywhere is very important. We would go to parties, church, and parks and socialize as much as possible, always trying to find happiness in life.”

The support system can also should assist with this adjustment. “My friends help me and my family maintain our normalcy by stopping at our house or visiting us at the hospital,” Moreno says. “One thing that is very important is they never treat us differently; they talk to us like the family we are. Most of our friends try their best to understand us, invite us to events, and ask how to help us be OK. We are a normal family, just one that is dealing with childhood cancer.”