So many variables went into such the life-changing, definitively "you have cancer," day when we shaved our daughter’s head.
My daughter was diagnosed with rhabdomyosarcoma on Jan. 28, 2019. Things happen very quickly when you get a cancer diagnosis. First, there’s the shock of hearing cancer, meeting with the oncology team to learn the specifics of the cancer, more scans, port placement surgery, and then the first chemo. All of this happened within seven days. Then, eventually, one of the many realities of chemo crept into our daughter’s life: hair loss.
How do you tell a little girl she’s going to lose all her glossy, dark brown, curly hair? And that we’re going to shave it off once it starts to fall out?
My initial thought was I'd do some Googling and come across a lovely "mom blog" with a post about shaving their child's head. Afterward, I'd have all the answers we needed. There wouldn’t be any trauma, no looking back in regret, it’d be perfectly done thanks to my insider tips from the “mom blog.” What the heck was I thinking?
Seriously, I thought surely someone has documented this event with a series of pictures shot during golden hour with the soft filters that make pictures just lovely. Their blog entry would say something like, "On Sunday we went out for blackberries to prepare our weekly organic smoothies that provide antioxidants that will be the lone source to cure this cancer. We all wore our flowy organic linen dresses. A stranger happened upon us to take professional-looking pictures because we were so inspirational. We had a perfectly planned picnic by a brook. We then shaved our child's head and there were no tears or difficult moments. After we shaved her head, we ate a fresh summer salad from organic vegetables grown in the Alps."
I was looking for something like that, so I'd feel safe and warm instead of facing the terrifying and cold inevitable truth.
I searched online and asked people for advice. I did this because I didn't want to make any mistakes. I wanted this process to be perfect and not traumatic. What I wanted, which was impossible to find, was basically "Look here! Here is EXACTLY how to do this right! It will be FINE as long as you read and follow step-by-step."
That information doesn't exist.
Since I couldn’t find that story online, I decided to write my own blog about it. So, here goes our story of shaving our daughter's hair. It's not a HERE! DO THIS JUST LIKE US! because, like you, I'm playing this all by ear. None of us are issued an "In case your child gets cancer, break glass here" instruction manual. Here's what we did, and the steps that lead us to it.
You'll be told to expect hair loss within three or four weeks of chemo. Our daughter’s hair started to come out at three weeks. First, you'll see thinning patches and notice how much is coming out when you brush their hair. Eventually, her hair was all over her pillow as she slept. She'd pull it out in clumps as she used the bathroom. We knew it was time to shave it.
How we talked to her about it
When you meet with your Child Life Specialist, they will have a bald doll where they demonstrate certain procedures your child will have, such as port access, port de access, etc.
Our daughter made a casual mention that the doll was a boy. She assumed it was a boy because the doll didn't have hair and, according to her, boys had short hair and girls had long hair. We used the momentum of that comment to talk about how the doll has cancer and many kids, boys and girls, who have cancer will be bald. It doesn't make them less than anyone else. It’s just something that happens because their body must make changes so it can kill the cancer.
I don't want to sugar coat this moment and put a “mom blog” filter on this because telling her this was next to impossible. I was barely able to get the words out of my mouth. I choked up with tears (for the 1,000th time that week) and tried my best. God bless our Child Life Specialist, Nicole, because she was able to amazingly fill in the gaps of what I was trying to say.
My husband and I stood back to see how she'd react. We held our breath, choked down a sob and waited to see what she’d say. I realized this was one of those moments where you see how your child's strength will put any grown person to shame. It is fact: kids are resilient. She shrugged off the news, digested it and went back to coloring. Chances are she asked for more glitter to be added to her paint. Child Life Specialists are quick to bring out the glitter!
Baby steps. I got the idea to get her hair cut shorter so when her hair started to come out, it would be easier to manage. I only trusted the salon I go to in Houston for this job. I took her to The Palour for two reasons: I knew Colette would love the idea of going to a fancy place to get her haircut and I’ve been there when they were cutting a woman’s hair short before she began her chemo treatments for ovarian cancer. The way they treated her with such care and love, while keeping the moment light and friendly, was something that always stuck in my mind and made me a life-long customer.
I searched for pictures of girl’s with short hair. I’d show her pictures of actresses who cut their hair short for movie roles. Nothing was working until I came across a clothing company ad and one of the girls had the cutest short hair. I showed Colette the picture and she liked the haircut.
I made the appointment via text because I couldn’t say out loud why I was making the appointment. Finally, the day arrived, and I was trying my best to keep my cool and not show how terrified I was on the inside. My daughter had already been admitted to the hospital for three days due to an infection, so I knew the dangers of bringing her out of the house.
However, I also knew this was the only option I fully trusted to help us. So, with a lot of trepidation, off we went to the salon. Colette put on her best Elsa dress, put on her Elsa hat from The Magic Yarn project, and was ready to go.
She was met with oohs and aahs as we walked into the salon. Everyone complimented her dress and agreed she chose the best picture for her haircut. I can't thank the entire staff at The Palour enough for making her feel so special and treating me so well. She came out of the salon with a precious short haircut, her spirit fully intact and no tears. It was as close to perfect mom blog as I could get. I slowly realized I can’t control everything.
Soon, her hair was aggressively coming out. She'd go to the bathroom (your child will go to the bathroom a lot due to all the IV fluids they're given) and pull it out. She made a little tumbleweed of hair on the bathroom floor. Her hair was all over her hats, her pillow, her face, her mouth, our faces, our clothes, and our mouths.
We knew letting the hair fall out wasn't an option when she’d get hair in her mouth as she slept. We told her we'd have to shave her hair when we got home. She flat out refused. We tried as gently as we possibly could to bring it up how necessary it was to shave her head. We spoke in light tones, we'd work it into conversations when we could, we talked about inner beauty, and we talked about how it wouldn't hurt. We talked and talked and talked. Nothing was getting through to have her agree to shave it off.
Finally, an idea occurred to me, and I told her I'd cut my hair. If she shaved her head, then I'd cut my hair however she'd like it to be cut. I could see that got her wheels turning, and I could see her coming around. This is another moment I won't apply a filter to, and I need to be fully honest about. I only showed her the short haircuts I had on my Pinterest page. I couldn't bring myself to promise that I'd shave my head. Simply put, I'm not that brave. My (now) 6-year-old whoops my tail in the bravery department.
She was finally released from the hospital. We got home and had to talk and talk and talk, gently remind, gently prod, and gently do all the things to get her to agree to shave her head. We reminded her of how Mom will get her haircut too. As a joke – but we would have totally done it if it helped – we offered to shave the dog. All the things. There was no budging on her end. All the while, piles of hair were everywhere – the couch pillows, beds, her clothes, our clothes, and everyone’s mouth.
How did we finally convince her?
Bribery. Good old-fashioned bribery. My husband told her she could get a game on her iPad she wanted for a long time. It's a game where you get to beat up a doll. I can’t stand the game; however, you go to all new places when your kid has cancer. What’s acceptable in your day-to-day changes and you must adapt. Bribery and Oreos for breakfast included.
My husband got a chair and took her outside. She was already busy playing the game on her iPad, so she was in a zone. I didn’t say anything to him because, as we commonly say in our house, you don’t talk to a pitcher during a no-hitter. He had succeeded and I was just going to keep playing it cool.
I stood outside by her as my husband shaved her head. I marveled at his calmness as he carefully made sure to get as close as possible without harming her. He was so strong. I documented a lot of things during her cancer journey, but I didn’t take any pictures while he shaved her head. I was scared she'd move her head and he'd nick her. I also wanted to be fully present to offer my silent support. She didn't talk much during the process. She didn’t cry or act out. She quietly played her iPad game and it was eerily silent except for the buzzing of the clippers.
After a while, she finally had enough, so my husband had to stop. He had to throw in the towel and know that's as good as it was going to get. It was hard because he couldn’t get it as close as he wanted. There were some parts that were longer than others and the perfectionist in me wanted that fixed so badly. That’s another learning lesson for me that she gets to call the shots when it comes to her body and I’m not in control of this.
That night she looked so small in our bed. She looked frail and sick. She officially looked like a “cancer kid.”
I stress over her baldness way more than she does. I only feel fully comfortable going out in public when we go to the hospital. I close the doors to the oncology department and can breathe again.
We're with our people there.
These kids and parents aren't going to stare because we're all too exhausted to look up anyway. We're safe there.
Conversely, my daughter doesn't care about being bald. I'm so grateful for that. She just says "I'm bawld" in a very cute south-Texas way. We even nicknamed her "fuzzy." I asked if I could still call her fuzzy when her hair comes back, and she giggled and said sure. She takes it all in stride, and I'm forever in awe of her for that. She sometimes wants to wear a hat, but most of the time she takes it off. I cringe at the idea that someone will say something and destroy her c'est la vivre attitude. If that happens, you may see me on the news in a viral video of “When Moms Attack.”
Here's what I know after looking back through her journey: perfection doesn't exist. Seeking perfection to avoid hurting won’t help anything because, your child has cancer, and it constantly hurts. I could search the internet over and over and still wouldn’t find the perfect solution for her. Finding the grace of giving up control is nearly impossible when it concerns your child. It’s easy to seek control in times of stress and you strive to hold onto anything you can mold to your way. I’d lose it when things aren't done the way I'd do it – like too much clutter, the dishwasher was loaded incorrectly, and my clothes were folded wrong.
Why? Because it's a chaos that I can control. What did it get me? Anxiety and being terrible to family trying to help. So, I'm working on calming down. Just because she's dressed "just so" or my kitchen doesn’t look like it belongs in a magazine won't cure her cancer. My child still had cancer regardless of how clutter-free my outside life looked. Live in the present, focus on your family, and find the light in the darkness. These things have been my saving grace and I try to remember them when I begin to spiral.