August 21st, 2019
| Caregiver: Rhabdomyosarcoma
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 January 28, 2019. First, we had to deal with the shock of hearing cancer, meeting with the oncologist, going through scans, having her go through port placement surgery, and then her first chemo all in a span of seven days. Then, one of the 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 have to shave it off once it starts to fall out?
My thought was that I'd do some light googling and come across a lovely "mom blog" with a post about shaving their child's head. After reading the blog I'd have all the answers we needed. No trauma, no looking back in regret, all perfection. What the heck was I thinking? Seriously, I thought surely someone has documented the event with a series of pictures shot during golden hour with the soft filters . Their blog 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. I had a fresh blow out. A stranger happened upon us to take professional looking pictures because we were so inspirational. We drank organic lemonade served in my Anthropologie Depression Era looking lemonade set. We shaved our child's head, there were no tears in Perfect Mom Blog Land, and then we ate a fresh summer salad from vegetables grown by Nuns in the Alps." I was looking for something like that, so I'd feel safe and warm instead of facing the cold and terrifying inevitable truth. I searched and searched and asked and asked for advice. I did this because I didn't want to make any mistakes. I wanted this process to be easy and not traumatic. I was looking for the impossible, which is 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.
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. We were not 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 3-4 weeks of chemo. Colette's started to come out at 3 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 should (hopefully) have a doll where they can demonstrate certain procedures your child will have- port access, port de access, etc. I'm not sure of the exact name of the doll, but here's a picture of what it looks like:
Colette mentioned that the doll was a boy. She assumed it was a boy because the doll didn't have hair. We were able to use the momentum of that comment to talk about how the doll has cancer, and all kids, boys and girls, who have cancer will be bald. It doesn't make them less than- it's just something that happens because their body must have changes so it can kill the cancer in your body. I don't want to sugar coat this moment and put a Mom Blog filter on this moment- telling her this was next to impossible. I barely got the words out of my mouth. I choked up (for the 1000th time that week) and tried my best. God bless the Child Life Specialist because she was able to fill in the gaps of what I was trying to say.
Seth and I stood back to see how she'd react. I held my breath- or probably choked down a sob so I wouldn't lose it. 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.
I got the idea that we get her hair cut shorter, so that when her hair starts to come out it'll be easier to manage. I only trusted the salon I go to for this job. I did this because I knew Colette would love the idea of going to a fancy place to get her haircut. I also knew the stylists have done this before because I was there one day when they were cutting a cancer patient’s hair short before hers started to fall out.
I'm super visual, so I searched for pictures of girls kids with short hair. I came across a clothing company ad and one of the girls had the cutest short hair. I called Colette over to see the picture and she liked the haircut.
I made the appointment and the day arrived. I was trying my best to keep it cool. She had already been to the hospital once for an infection, so I knew the dangers of bringing her out of the house. I also knew this was the only option that I fully trusted to cut her hair. So, with a lot of trepidation, off we went to the salon. Colette put on her shiniest Elsa dress, grabbed her trusty tiger sidekick, and was ready to go.
She was met with oohs and aahs as we walked into the salon. Everyone complimented her dress. Everyone all agreed she chose the best picture for her haircut. I can't thank the staff enough for making her feel so special. She came out of the salon with the most preciously cut short hair ever:
We went through the week as usual: Chemo on Thursday, fever on Friday, ER visit late Friday night. She had to be admitted because she was neutropenic. She was in the hospital all weekend because she was on heavy dose of antibiotics to fight whatever was giving her a high fever, and she didn't have enough white blood cells to properly fight it.
You can see the bald patch in the front of her head in this picture. This was where 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, or face, our clothes, our mouth. Once it was in her mouth as she slept, we knew letting it all fall out wasn't an option. 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. We spoke in light tones, we'd work it into conversations when we could, we talked about inner beauty, 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-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. That got her wheels turning, and I could see her coming around. Here's another moment I won't apply a filter to- I showed her short haircuts on my Pinterest page. I couldn't bring myself to promise I'd shave my head. Real talk, I'm not that brave. My (now) 6-year-old whoops my tail in the bravery department.
We got home and had to talk and talk and talk and gently remind and gently prod and gently do all the things to get her to agree to shave. Told her how Mom will go get her haircut too. Offered to shave the dog. All the things. There was no budging on Colette’s end. All the while piles of hair were everywhere- the couch pillows, the beds, her clothes, our clothes, everyone’s mouth.
How did we finally convince her?
Bribery. Good old-fashioned bribery. Seth told her she could get finally get this game on her iPad that she had 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 real in your day to day has changed and you have to adapt. Bribery and Oreos for breakfast included.
I didn’t take any pictures while Seth shaved her head. I was scared she'd move her head and he'd nick her. I also wanted to be fully present to protect her from that, and I also knew she wouldn't want pictures. She sat quietly playing the beat up the doll game on her iPad. She didn't cry. She didn't talk much at all. After a while she finally had enough, so my husband had to stop. It was hard because he couldn’t get it as close as he would have liked to get. He had to throw in the towel and know that's as good as it was going to get. She had every right to call the shots on this one.
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- we're all too exhausted to look up anyway. We're safe there. Colette, however, doesn't care. God I'm grateful for that. She just says "I'm bawld" in a very cute south-Texas way. We 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 way of living. If that happens you may see me on the news in a viral video of When Mom's Attack if that happens.
Here's what I know after looking back: perfection doesn't exist. My search for the perfect way to handle her hair loss doesn’t exist. I could search the internet over and over and still wouldn’t find the perfect solution for her. Giving up control is nearly impossible when it concerns your child. When everything is out of your control you strive to hold onto anything that you can and stress to make it perfect. I lose it when things aren't done the way I'd do it. I lose it when we have too much clutter. Why? Because it's a chaos I can control. What does it get me? Anxiety, being a super B to family trying to help, and not enjoying the times in life that matter. I'm working on calming down. Just because she's dressed "just so" or my kitchen looks like a Real Simple makeover won't cure her cancer. It won't do anything other than be that way for maybe an hour- tops. My child still had cancer regardless of how clutter free my outside life looked.
I also love learning about things that have helped people. Here are two things that she loves to wear in her fuzzy stage in life:
She likes this Patagonia vest. It's soft, it's great for being cold in the hospital, and it has hidden pockets.
Soft, lightweight, hoodies with amazing messages on them. The founder's daughter had RMS, just like Colette, and they found that going through treatment in the summer made it difficult (and sweaty) for their daughter. That's how Bravehoods was born. Highly recommend. She can pull the hoodie up when she doesn't feel comfortable (or just wants to be snuggly), and pulls it down when she's okay with "bein’ bawld."
And Pajamas need an honorable mention. She lives most days in pajamas. If you ever want to get a gift for a cancer kid you can't go wrong with comfy jammies.
Hopefully this entry gives you some guidance into finding your own way to handle your child’s hair loss. There’s no one way to do it, everyone’s lives- everyone’s cancer journey-is so different. Rely heavily on your support team, move into action when the que’s come, and give up the control
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Kristen lives in Houston, TX with her husband, son, and daughter. The family have lived and traveled the world together but their biggest challenge was in January 2019 when their daughter was diagnosed with rhabdomyosarcoma. The experience of dealing with a child, and sister, with cancer has brought the family together in a way they never knew possible. Now that she's finished with treatment they're focusing on finding joy and gratitude in all things big and small.