By Adriana Lewin, LPC
Your child has a cancer diagnosis. Now what? How do you tell your child that they have cancer? How do you tell the siblings that someone they love has cancer?
It’s a very intimidating topic to discuss, for sure. Partly because you know that you may get asked the dreaded question: Will he or she die? And then also because you are still so unfamiliar with what treatment will even look like!
My top advice for discussing with your cancer child about their diagnosis would be to involve the Child Life Specialist. They are trained to do the hard conversations and have all sorts of tools in their toolbox to discuss for children of all ages in the way they learn and process best.
However, especially with COVID, enlisting the help of the Child Life Specialist may be extra difficult for the siblings, since siblings are not allowed in hospitals. And your cancer child may think of more questions that they want to understand at a later time, and Child Life isn't on speed dial.
Different age groups need a different approach, so I want to give you some ideas to help you through that conversation.
1. Enter their world
I would say the most important thing is knowing your child!
Pay attention to their mood. If littles are having a rough day, wait until they are in a better mood. If they are building, playing or coloring, join the play and then talk to them while they play.
If you have a teen in a bad mood, wait as well. I would recommend keeping the conversation somewhere private, like at home, so that they can feel free to express any emotions without the fear of being seen in public.
2. Provide an activity before you discuss anything:
Most children will benefit from an activity such as playing, arts and crafts or playing with play-doh or a fidget spinner. When I work with teens, I let them have one (or more) play-doh jars to fidget with while they talk or listen.
Legos are amazing for understanding the idea of our body being made up of billions of cells that BUILD every part of our body and what happens when one of them goes bad. It brings the abstract idea of cells into concrete, which further helps conceptualize what is happening.
3. Participate and play!
Sit down next to your child, take your own play-doh or paintbrush and mirror what activity they are doing. You are entering their world, not the other way around. You are about to tell them some really hard news that they may or may not understand.
4. You don’t have to make eye contact.
If you have a kid playing or even an older child who isn’t really responding or reacting to the news, it’s easy to assume they aren’t listening. But they are. They are listening and processing everything you say.
5. Help Identify the emotion which their face and body language reflects.
It’s okay to say “it looks like you are pretty silent, I wonder if you have any questions that I could try to answer?” or “You look very worried (sad, concerned, shocked, etc). If you can’t figure out what they are feeling, share your own feeling about telling them the news, such as, “Wow, telling you this makes me really sad, I wonder if it makes you feel sad or scared too?”
6. USE BOOKS!
Books are such a helpful way for younger kids to visually see what cancer is and the side effects and treatment options.
There are several books about cancer, BUT there are nott as many available for pediatric cancer. Below are a few books and resources that I recommend.
The American Childhood Cancer Organziation
The American Childhood Cancer Organization (ACCO) provides some really great books for children of all ages, including a book for siblings. Visit their link at https://www.acco.org/books/. They send pediatric cancer families books and other resources at NO COST. I highly recommend that you look through other resources (like the play kit) that they send for free as well. My children have all loved playing doctor with the thermometer, the stethoscope and bandaids to name a few. Per the recommendation of Dr. Candace Chuyou-Campbell on my podcast Episode 5, this is also an excellent way to let kids (both cancer kid and siblings) play out what they are about to experience in clinic or hospital.
The books from ACCO are great resources. The following are some examples:
We have used Marvelous Marley for our cancer kid. It's ideal for ages 1-5.
We also have used Oliver’s Story for the siblings. The ideal age is listed as 3-8 years old.
For the older kids, ages 6-12, they have Chemo, Craziness and Comfort: My book at Pediatric Cancer.
For the teens they have the journal book: Dance in the Rain.
They have several resources available that can help children learn and process about a diagnosis of pediatric cancer in the family.
I draw childhood cancer
Another super children’s book library/resource is through I Draw Childhood Cancer. The illustrations cover so many topics about what children go through during treatment, which can help children with anxiety know and understand more concretely what medical procedures they will have done; from PET scan, MRI’s and CT scans down to NG Tubes.
The young age can benefit by using illustrated books to help understand through the use of visuals what pediatric cancer is, and what their new “hair do” will likely look like and the use of new “accessories” like the port-a-cath and NG TUBEs to name a few.
You can visit their website at: https://www.idrawchildhoodcancer.com
You can also buy their books from Amazon if you look for Angus Olsen in the search box. As of now, you can’t find his books by looking up anything other than his name. I have linked one of the books below. It will help you find other books written by Angus Olsen. I believe he still has his books available for free as a pdf online through his website if you want to read it on your tablet/laptop.
Also, they use a portion of proceeds to fund childhood cancer research!
A solid tumor book we have shared with my children from age 3-6 (which it could easily be used up to the pre-teens) is Cancer Party. It is one of my kid’s favorites. The downside is that it only discusses solid tumors. It does not mention death, for those who are worried. It writes about cancer in general, so it doesn’t mention if the person with chemo is a child. Click on the image below to purchase it from Amazon.
A good book on Leukemia is Chemo to the rescue! This book was super informative to read through with my kids, even if we aren’t dealing with leukemia, because it talks about neutrophils which is something we lived by weekly dealing with solid tumors. It also has images for what port access will look like and what being connected to their IV “buddy” is like, as well as other procedures that leukemia children have to undergo. This book was recommended by another Licensed Professional Counselor whose child went through treatment for Leukemia.
After a while, your cancer child might not pay as much attention to the books, well, because they see it day in and day out and are probably tired of all things cancer. But at the beginning, books on cancer are very helpful to read and it helps them process what they are living by what you are reading in the books.
Also, the siblings love to read along too! Siblings want to understand what their brother or sister experience in treatment. Cancer and the treatment is something that is unfamiliar to a sibling, especially if they can’t be at the hospital or clinic (especially during COVID). But it is a great place to ask your child questions about what you are reading, check in on the feelings or any questions they may have about what they are reading.
7. It’s not contagious and it’s not their fault!
Most younger children will immediately think that cancer is contagious like a cold. They also may start to believe it’s their fault: either through accidentally bumping into them or some other event or action they believe caused their own or their sibling’s cancer. It’s important to clarify that it’s not contagious and nothing they did caused this.
8. Questions about Death:
If your child is old enough to ask questions about death, it is ok to tell your child:
“I don’t know but that you are taking him to the best doctors who will do everything they can to get your child healthy.”
Be prepared. I had to answer that question for my 5 year old. It wasn’t easy, but I wasn’t surprised he asked because he knew my sibling passed away a year before. My cancer child, 3 years old at the time of diagnosis, has never asked about death. Each child is different as life experience with death varies for each child. But if your child does ask, AVOID telling them “NO, they aren’t going to die” UNLESS you are absolutely positive that your cancer child will survive. By replying with “No, they won’t die”, if things take a turn for the worse, your child will resent and be angry that you “lied” to them to protect them. It will break their trust in your word. It will break their trust in you. If you are nervous about how to respond to the possible question about death, practice reading the quote above until you feel like you can say it in your own words.
Therapy and Play Therapy
And my final recommendation would be to get your cancer child, any siblings and yourself to a therapist as soon as you can. A pediatric cancer diagnosis is ALOT to handle for adults, but it’s equally as difficult for children who are still learning and identifying feelings and emotions vocabulary while fighting their imagination with underdeveloped logic and coping skills.
During COVID, many therapists now do telehealth, which would work fine for school aged children and up. The hospital may already have play therapists who have plenty of experience working with children with critical illnesses, especially at cancer treating Children’s hospital.
At the recommendation of Dr. Candace Chuyou-Campbell, a Registered Play Therapist Supervisor, Play Therapy is ideal for those up to age 11. Yes, even toddlers can go to play therapy. Seek out a Registered Play Therapist (RPT) for children up to that age and even a little older, as they are well versed in working with kids. Teenagers will benefit from talk therapy, music therapy or art therapy.