The word cancer can instantly instill feelings of fear, discomfort, and anxiety. And this is doubly so when it comes to our children. Cancer is theleading cause of death among diseases in children under the age of 16 in the United States, and every year, about 9,000 children are diagnosed with cancer.
However, more than 70 percent of children with cancer outlive the disease, as both physical and mental treatments improve. Today, we’re tackling the heavy but important topic of how to help your child’s mental health during cancer treatment.
Helping Your Child Understand Cancer
When it comes to cancer treatment for your child, it’s important to teach them about the treatments and journey they will undergo. After all, cancer treatments take a lot of time and will definitely disrupt the schedule your child has had up until now.
But how do you explain what cancer is to a child without scaring them into a worse mental health state?
The key here is to keep in mind timing, tone, and simplicity. When your child is first diagnosed with cancer, it can be very overwhelming for you as a parent, guardian, or family member to take in the information. Ideally, your child will not be exposed to confusing details from a doctor at this point.
Take the time you need to understand the diagnoses, before turning to the task of describing it to your child. When you do, you’ll want to break down the effects the disease will have on your child’s everyday life. They don’t necessarily need to know about scary statistics or the history of cancer research.
But they do need to understand that cancer is a sickness that can result in many symptoms and requires hospital visits to treat. There are many resources online that can help you with a more specific script, including my bookWhat Happens When a Kid Has Cancer.
Our book was written to help relieve anxiety and confusion when it comes to children’s cancer diagnosis and treatment. It covers the main points of pediatric cancer, deconstructing a scary disease into an easy-to-understand story about a young girl describing the illness to her stuffed giraffe toy.
Separate Medical Costs From Your Child’s Cancer Journey
One of the largest concerns when it comes to fighting cancer at any age is medical cost. Keep in mind that there is no right or wrong way to balance medical costs with medical treatment. The right choices are made for your family based on your current status, ability, and diagnosis.
When choosing how to proceed with medical treatments for your child’s cancer, it’s important to keep conversations with your child focused on treatment and symptoms instead of medical costs.
Speaking to your child about the negative effects on their body is not fun. But your child has the right to know about what is going on in their body due to cancer and treatments. Knowing what lies ahead in terms of side effects or treatments at the doctor’s office can actually empower your child and fortify their mental health.
But when it comes to costs, there is rarely a case in which your child will benefit from knowing specific cost breakdowns. Cancer treatments can be expensive, even with insurance. However, very few children have any ability to help in reducing these costs. Telling them too much can result in them worrying about cost instead of focusing on recovery.
Any of the stress you feel when it comes to cancer treatment costs is valid. However, finding another adult to help support you emotionally concerning costs is extremely important. This could be a friend, someone from a support group, or a therapist. The key here is to give yourself grace in the monetary decisions and protect your child from unneeded additional stress.
Empowering Your Child with Knowledge & a Schedule
Helping your child understand in an age-appropriate matter what cancer is and potential treatments for it is an essential first step. Next, we’ll want to help them feel secure and empowered by giving our child as much control over their schedule as possible.
This can be done in a number of ways. If your child is old enough, encourage them to keep a digital or paper planner to keep track of appointments and days of rest. Paper planners are especially malleable in terms of how detailed or non-detailed they can be.
Some kids will love to decorate daily planners with stickers and washi tape, while others may want only a monthly overview of busy vs. non-busy days. Best of all, you can collaborate on a planner journey with your kid, too! Show them your own planner, digital or not, and dedicate time each week to match your schedules and get on the same page.
This can provide built-in time to make sure that your child is not left behind when it comes to understanding upcoming appointments and responsibilities. If your child is loving to journal and plan, too, this can also be a great bonding experience.
If your kid is a bit too young to write, visual planners and reminders are still a great way to get your child involved in their own cancer treatment schedule. Here at Mighty + Bright, we have aKids with Cancer magnetic schedule set.
This set is fully magnetic with a dry erase board and various magnetic steel buttons. There is also a reusable sticker sheet with hospital, home, chemo, radiation, scan, blood draw, medicine, and fill-in-the-blank stickers.
Using this set, you can create a visual calendar alongside your child to organize their new schedule with cancer treatment. This can help them feel more confident in knowing what is next, and empowered when choosing fill-in-the-blank activities for their time at home.
Finding Psychosocial Help for You & Your Child
Being there for your child and creating schedules together can be very empowering and healing for you both. However, there is absolutely no shame in needing additional mental health support for both you and your child.
In fact, working with mental health professionals can only improve both you and your child’s ability to cope independently and together when on a cancer journey. Psychosocial support refers to support in the realms of mental, emotional, social, and even spiritual needs.
Counseling, education, therapy, and group support organizations can serve as great avenues for support.
Cancer support groups in particular can be monumental on you and your child’s cancer journey. While friends and family should be understanding and willing to offer shoulders to lean on, they may not be educated enough or have the bandwidth to offer enough support when you need it.
Cancer support groups typically consist of other families and individuals on a similar journey to you. They can offer you hope, understanding, and even technical help in solving practical problems at work or school.
There are a wide variety of cancer support groups that you can find online or by asking your local hospital for recommendations. Some groups focus on cancer as a whole, while others focus on specific diagnoses. Some are open to all ages and genders, while others are more specific to the age of the patient or specify for family support as a whole.
No matter the avenue you decide to explore in finding psychosocial help for you and your child, it’s important to take pride in seeking aid when you need it. There’s no shame in accepting a helping hand!
Create a Communication Plan with a Patient Advocate
One of the biggest challenges in cancer treatment for children is ensuring that your child’s needs are met and their opinion is heard and valued. Cancer is a horrible disease that is difficult for anyone and only made more difficult for individuals who are not able to speak for themselves.
Children are one of the most vulnerable populations when it comes to medical treatment, as they are often not yet fully equipped with the words and phrases necessary to ask for help and describe what they need or are going through.
As a parent or guardian, being a spokesperson and advocate for your child with cancer is a natural role. However, stepping into the role due to necessity doesn’t mean that you are automatically properly equipped to do so.
This is where patient advocates and patient advocate training comes in!
Kevin Brasler of Checkbook.org spoke to 6ABC concerningpatient advocacy last year. Brasler explains that patient advocates can help prevent early discharges from hospital visits and even help avoid surprise medical bills. They can do this by acting as a liaison or translate between your child, you, and your child’s healthcare provider.
Better yet, many hospitals even have their own patient advocates on staff. No matter how educated you become on your child’s treatment plan, a patient advocate can help fill in any knowledge gaps and communicate effectively.
Validate Your Child’s Experience & Feelings
As we explored in a previous article on supporting our children’s mental health, validating your child’s feelings can help them self-regulate. This need is especially important for children undergoing cancer treatments.
Cancer treatments can be harsh on the body, and most of us will never experience the effects it can have on our body, mind, and soul. While your child deserves to have a pain-free childhood, it’s likely that they will be experiencing pain, confusion, and sadness during cancer treatment.
It’s okay and even beneficial to validate your child’s negative feelings. Sit with them, allow them to vent to you if they are able, or simply hold them. Cry with them, and agree that this is unfun and unfair. While negativity and sadness can spiral into helplessness, it is equally dangerous to try and pretend like everything is fine when it is obviously not.
It is okay to simply have space and room to be sad with your child while taking care to keep more specific worries between you and another adult. If you’re struggling to think of a way to do this without spiraling, try dedicating a set amount of time to having an honest discussion about feelings with your child.
This can give them the space to ask or show a need for emotional support. Specifying 30 minutes to this talk ahead of time can help you both feel more secure in knowing that the conversation can end if it becomes too heavy. You’ve got this!
Let Your Kid Be a Kid! Scheduling Fun
Cancer can be a devastating diagnosis, particularly in children. All we want as parents is to see our kids flourish and be happy. But cancer can take away many things from children, including the energy to participate in activities or play that they once enjoyed.
Cancer treatments will up a large amount of time in our new schedules. But that doesn’t mean that your child doesn’t need, or deserve, to have fun!
Believe it or not, scheduling in time for both heart-to-hearts and simple fun activities with your child are both essential and beneficial in their cancer journey.
Depending on your child’s energy levels and condition, they may or may not be able to participate in activities they previously enjoyed. However, there are countless ways to amend old activities into new ones. Instead of playing on a large soccer field, make a smaller makeshift field in the backyard.
Instead of going for large mountain hikes, go on smaller park trails with the family dog. Movie theatres can be brought to your own home with a wall projector, and video games can also be made into a family event with the Nintendo Switch or a family room PC monitor.
Helping Your Child’s Mental Health During Cancer Treatment
When it comes to supporting your child during cancer treatment, there is no best option. But by helping your child understand their treatment plan and giving them control over their schedule otherwise, you can create a safe and comfortable space for them to recover.
Read more about navigating hard times with your children in a healthy manner here on Mighty + Bright. You don’t have to figure it out all on your own!