So your child's friend or family member has lost their hair to cancer? Not sure how to approach the subject with your child? This is the post for you!
It must be such a silly thing as a child to see another little kid that looks close in age have no hair. And you can always count on the little children to be so brutally honest, raw, and unfiltered, right? Inevitably, they will ask that child "Why does your hair look so silly?" Like the time my oldest son looked at my "mom belly" and said, "Mommy, do you have a baby in your belly?". Silence. Laughter. Humbled.
The things is, I am an adult and I have the ability to shake off comments like that to the point where it doesn't affect my mood and self esteem. Well, to an extent, because those little truth bombs can be motivation to make changes.
But one thing I have realized being a mom to a freakin' awesome warrior is that parents who don't have cancer exposure don't know how to address this with their little kids. And that's ok. It's honestly a strange and delicate topic that should be addressed, preferably BEFORE your child sees a child with cancer. Please, take the time to discuss what is happening to their friend or family member before the next time they visit a cancer kid. Allow me to explain:
Hair Loss!
Hair loss can happen as immediately as the 2nd week. Evan’s hair loss didn’t happen until sometime around the 3rd week. He was blessed with a head full of hair since birth, so his hair slowly thinned out by appearance, but he was losing hair rapidly every day. It was everywhere. In his mouth, in his eyes, all over his clothes, all over MY clothes, in his dinner. It was itchy, and invasive. So we buzzed his head down to less than an inch, and then it was still everywhere on our clothes but less noticeable in our mouths or food. But eventually, it thinned out so much that he was left with literally a few rogue strands that would hold on stubbornly to his head, at most 10 total. Some kids lose all their hair and fast, some lose most of their hair, and some are left with small, super thin patches that remind you of a baby bird with more skin than feathers.
Inevitably, a cancer kid will have to see family or friends, either virtually or in person. I asked people who would visit to discuss with their children that Evan would look different and not have hair in order to try and minimize the questions or comments directed at him. I also asked that he be treated the same as his siblings. No special treatment (within reason) and if we had visitors, that they were not to say that they were over to visit just my cancer kid, but were coming to visit the family (unless the siblings weren’t familiar with the visitor, such as Evan’s teacher or classmates). It wasn’t only for the siblings benefit of not feeling left out or invisible, but also so that Evan wouldn’t feel the pressure of being special for the worst reason, being a sick child. We wanted to maintain a sense of normalcy as much as we possibly could in a situation where our life was anything but normal now.
One day, my four year old cancer child was FaceTiming with a friend, and immediately upon seeing him with his new, freshly bald look, the sweet little kid said "Why does your hair look so silly?! (giggle)" and it caught us all by surprise! My child didn't know what to say and I immediately looked to my child to see his expression. It was an empty expression; One of the “I am processing how I think/feel about this” looks.
So later that afternoon, on a car ride to pick up dinner, I asked my child about his experience.
“Evan, do you remember when your friend asked you about your hair?”
He gave me a silent head nod.
“Did that make you feel sad?”
Another silent head nod.
My heart sunk. He was old enough to understand.
I immediately validated his feelings.
“Honey, it’s okay to be sad. It’s ok to feel whatever you feel. Would you like to think of silly ways to answer the question next time someone asks you?”
Another head nod, but this time with a glimpse of a smirk.
So we did just that. We all thought of silly reasons hair would be missing as a family, and we all giggled at the creativity. Our dog licked off his hair. His hair strands each individually jumped off his head with parachutes because they wanted to go sky diving. We giggled and turned the moment into a less serious conversation.
We reminded Evan that his hair would grow back after he stopped taking chemo. That his hair was missing because the chemo makes his hair fall out, but it would grow back. That his new look was only temporary, not forever.
It took Evan almost 5 to 6 months to lose all his hair, including eyebrows and eye lashes.
Should I tell my child that their friend or loved one has cancer?
ABSOLUTELY. Please do. Please explain to them that their loved one is sick. They have a tumor or blood cancer. That because of this sickness they will have special medicine, called chemo, that will make their friend’s hair fall out completely. It will also make their friend look different and even act different at time. It will also make them feel very sick to their tummies and they can get very sick easily so we need to make sure and wash our hands before we play with them and if our throat tickles or we have a runny nose, it is more safe for us to not visit our friend until we feel all better. It’s okay to want to FaceTime, Skype, video chat when we can’t see them and really miss them.
Some kids will have to receive steroids as part of their treatment, and those kids will gain weight very rapidly and it can cause them to act out more aggressively than before.
It's okay to tell them that cancer kids may have lower frustration levels than before, and they can get easily tired so they may not be able to keep up with the same level of activity, so if that happens, see if a new activity would help bring it down to a lower energy level. And if they are throwing tantrums or having a hard time sharing, it's because of what they are going through with their body and their mind.
I get that talking to your kid about something serious like cancer might be more than you want to share. So finding what to say is more about “life experience” than “age appropriate”, or a balance between the two.
My kids knew what a tumor was before Evan’s diagnosis.
Several months before Evan was diagnosed, my kids saw my Facebook feed and saw a picture of a sweet little girl who had lost all her hair. They asked me who she was and why she didn’t have hair. I explained that she was the daughter of someone I have known since 2nd grade and that she had a tumor.
I got asked “What is a tumor?” Having at that moment in time, a 5 year old and a 3.5 year old, I tried to explain that she had a little tiny rock in her body that had grown. It wasn’t supposed to be there, and it’s not good that it’s there, but she was taking medicine that made her hair fall out and the medicine would try and make the rock disappear for good.
They knew what a tumor was, as simply as I could explain it. They understood it wasn’t good.
If you are afraid to talk to your child about cancer, start out with this book. I HIGHLY recommend a book called “Cancer Party! Explain Cancer, chemo, and radiation to Kids in a Totally Non-Scary Way” by Sara Olsher. My children read it several times and it helped make an abstract thought more concrete. It will give you vocabulary and explain cancer very well, and it doesn’t mention death if your child hasn’t asked or is unfamiliar with the concept of death. It's a good book for as little as 2-3 and as old as early teenage years. Heck, it taught me about cancer as an adult.
What if they ask me about death?
Some of you might be afraid that your child may ask about death if you explain that a child has cancer. And that’s ok to be scared/nervous, but it shouldn't keep you from discussing cancer.
My younger sibling had passed away a little over a year before my son was diagnosed with cancer, so my children were familiar with death, as much as a young child can be. They had been to my brother’s grave site several times with me as I mourned. They know we believe their uncle is in Heaven with Jesus and God and all the beautiful angels. They also understand it was sad and that we wouldn't see our loved one again here on earth.
When I sat down to play with my then 5 year old to tell him that his brother had cancer, I remember having to be authentic and strong at the same time. As soon as I explained that Evan had a tumor behind his eye and inside his head, Austin asked me “Is he going to die?”
Gulp.
As I sit here and think of that moment with my child, I can’t help but relive the emotions as I recall that memory. My body still shakes as I write this out, and my eyes still let out tears.
Austin was scared. He was curious what this tumor would mean for his brother and for our family. I answered him honestly.
“You know baby, I don’t know if he will or won’t. But it sounds like you are scared and worried for your brother. I am scared too. I don’t have all the answers, but we are taking him to the best doctors that will do all they can to help get the tumor out of his body for good. And we are praying that he gets better.”
Was it easy to tell him? Nope.
Did I have to say it through held back tears? Yep.
Is it okay to cry? OF COURSE!
However, I felt that most importantly, he wanted me to address his questions and fears. He knew I had to pause to make sure I could utter the response without me choking on my own sorrow. He saw tears stream down my face. He believed me when I said I was scared and that even Mommy and Daddy are scared, and that it's ok to be scared and sad because it is something sad and scary.
Would I tell him that Evan wouldn’t die? No.
Why not? Because I don’t know what God’s will is for my son, and if Evan didn’t make it, I will have broken Austin’s trust by lying to him to just try and protect him from pain that he may have to endure if Evan wasn’t healed.
He was satisfied with my answers to his questions, so we continued playing. I reminded him that he could always ask me questions about his brother and I would always answer them as best as I could.
So what are my tips for talking to your child?
Be HONEST, be authentic, and prepared to answer questions about death.
Engage in play while you tell them. Enter their world. If it’s a toddler, play with their toys or paint while you talk. If you have older children, engaging in an activity is still a really great approach as it allows your child to “hide” their tears if they want.
Tell them the most basic terms and concepts. Make an abstract concept concrete by using examples of things they are familiar with.
Don’t hesitate to ask your parent friend that is dealing with pediatric cancer on ways to best explain it to your child. They can tell you how they explained it to their child or the child’s siblings.
If you don’t know the answers, tell them you don’t know and you will find out.
Ask them if they have questions. Ask them directly how they feel. If it’s a younger child, you will have to ask them directly if they are scared, sad, etc.
Validate their feelings. Share that you are scared or sad too.
After a play date, please check on your child and see if they have any questions or feelings about their time with a cancer kid.
Then validate those feelings and answer the questions as best as you can.
Don't be afraid.
There is no need to be afraid to interact with a cancer family (Except if you are sick). Even the strongest of kids are grappling with fear of what cancer means, frustration of all the drastic and sudden changes and the extreme physically and emotionally challenging treatment they are under, even long after treatment.
By preparing your child before seeing a cancer kid, it helps minimize hurting an already fragile spirit of a cancer kid and his/her parent. It also helps your child know how to best play or interact with that child ahead of time. It helps a cancer child feel seen for who they are, not for what they have. After all, a cancer kid just really wants to feel normal when he/she is anything but.
And parents to a warrior: don’t be afraid to ask your friends to have those discussions before your kids see each other. Additionally, to help the process, send them a current picture of your cancer kid so they can see your child’s new look. And if/when a parent asks you how to discuss it with their child, keep an open heart and know that they are trying to do right and need some guidance in some unfamiliar ground.