Shaving your child's head
I can now look back on the events leading up to shaving Colette's head with more clarity.
I wrote a blog entry to my husband after it, but I supposed I wanted to do more of a How To post. Here's the thing- it's an impossible topic to write about. So many variables went into such a life changing, and definitively "you have cancer", moment.
My thought was that I'd do some light googling, come across this glossy "mom blog" about shaving their child's head, and I'd have all the answers we needed to do this perfectly. No trauma, no looking back in regret, all perfection. What the hell was I thinking? Seriously, I thought surely someone has documented the event with a series of pictures with the soft filters and shot during golden hour. 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 flowey 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 (link in bio). 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 Nun's in the Alps." Something like that so I'd feel safe and warm instead of facing the cold and terrifying inevitable.
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 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 has to 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.
What next?
I got the idea that we get her a cut her hair shorter, so that when her hair starts to come out it'll be easier to manage. I only trusted The Parlour, which is the salon I go to, for the 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 cut a woman's hair who had ovarian cancer.
I'm super visual, so I searched for pictures of girls kids with short hair. At the time I was about to get her some clothing from a company called Wildflowers . I noticed one of the girls in the picture had the cutest short haircut. 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. Colette put on her shiniest Elsa dress, grabbed her trusty tiger sidekick, and was ready to go.
She was met with ooh's and aah's as we came into the salon. Everyone complimented her dress. Everyone all agreed she chose the best picture for her haircut. Seriously, I can't thank the staff enough for that.
We went through the week same 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 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 our 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.
Then, 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 butt on bravery.
We got home and had to talk and talk and talk and gently remind and gently prod and gently do alllllll 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.
How did we finally convince her?
Bribery. Good old fashioned bribery. Seth told her she could get a game on her Ipad that she wanted for a long time, and we wouldn't let her get it. It's a game where you get to beat up a doll. I cant stand the game. But, you go to all new places when your kid has cancer. It's not real life, and reality has changed.
I didnt take any pictures while Seth shaved her head. I was scared she'd move her head and he'd nick her. I 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 awhile she finally had enough, and Seth wasn't able to get it as close as he would have liked to get. We had to throw in the towel, and know that's as good as it was going to get. She had the 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 Heme/Onc department and can breathe again. We're with our people there. These kids and parents aren't going to stare- we're all to 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. She sometimes wants to wear a hat, but most of the time she takes it off. I (internally) cringe at the idea that someone will say something, and destroy her c'est la vivre way of living. You may see me on the news in a viral video of When Mom's Attack if that happens.
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.
Here's what I know after looking back- perfection doesn't exist. No duh, right? But that's something I think we all know, but it's hard to put into practice. When everything is out of your control you strive to hold onto anything that you can control, and make 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. Perfection isn't real, having control over anything is impossible. But, hopefully, this will help someone.
I also love learning about things that have helped people. Here's what Colette loves in her fuzzy stage in life:
Here are two things that she loves to wear:
Soft Rabbit Hat
She loves this! It's so soft. She gets a lot of compliments on it because it's seriously super cute. The lady who makes them is in England. She knits them as they're ordered, so it took a little bit of time to get it. Worth the wait.
Bravehoods
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.
#pediatriccancer #rhabdomyosarcoma #fightlikeakid #fightlikeagirl
I wrote a blog entry to my husband after it, but I supposed I wanted to do more of a How To post. Here's the thing- it's an impossible topic to write about. So many variables went into such a life changing, and definitively "you have cancer", moment.
My thought was that I'd do some light googling, come across this glossy "mom blog" about shaving their child's head, and I'd have all the answers we needed to do this perfectly. No trauma, no looking back in regret, all perfection. What the hell was I thinking? Seriously, I thought surely someone has documented the event with a series of pictures with the soft filters and shot during golden hour. 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 flowey 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 (link in bio). 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 Nun's in the Alps." Something like that so I'd feel safe and warm instead of facing the cold and terrifying inevitable.
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 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:
 |
| Picture taken day after port placement, and the first day of chemotherapy. |
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 has to 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.
What next?
I got the idea that we get her a cut her hair shorter, so that when her hair starts to come out it'll be easier to manage. I only trusted The Parlour, which is the salon I go to, for the 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 cut a woman's hair who had ovarian cancer.
I'm super visual, so I searched for pictures of girls kids with short hair. At the time I was about to get her some clothing from a company called Wildflowers . I noticed one of the girls in the picture had the cutest short haircut. 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. Colette put on her shiniest Elsa dress, grabbed her trusty tiger sidekick, and was ready to go.
She was met with ooh's and aah's as we came into the salon. Everyone complimented her dress. Everyone all agreed she chose the best picture for her haircut. Seriously, I can't thank the staff enough for that.
We went through the week same 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 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 our 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.
Then, 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 butt on bravery.
We got home and had to talk and talk and talk and gently remind and gently prod and gently do alllllll 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.
How did we finally convince her?
Bribery. Good old fashioned bribery. Seth told her she could get a game on her Ipad that she wanted for a long time, and we wouldn't let her get it. It's a game where you get to beat up a doll. I cant stand the game. But, you go to all new places when your kid has cancer. It's not real life, and reality has changed.
I didnt take any pictures while Seth shaved her head. I was scared she'd move her head and he'd nick her. I 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 awhile she finally had enough, and Seth wasn't able to get it as close as he would have liked to get. We had to throw in the towel, and know that's as good as it was going to get. She had the 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 Heme/Onc department and can breathe again. We're with our people there. These kids and parents aren't going to stare- we're all to 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. She sometimes wants to wear a hat, but most of the time she takes it off. I (internally) cringe at the idea that someone will say something, and destroy her c'est la vivre way of living. You may see me on the news in a viral video of When Mom's Attack if that happens.
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.
Here's what I know after looking back- perfection doesn't exist. No duh, right? But that's something I think we all know, but it's hard to put into practice. When everything is out of your control you strive to hold onto anything that you can control, and make 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. Perfection isn't real, having control over anything is impossible. But, hopefully, this will help someone.
I also love learning about things that have helped people. Here's what Colette loves in her fuzzy stage in life:
Here are two things that she loves to wear:
Soft Rabbit Hat
She loves this! It's so soft. She gets a lot of compliments on it because it's seriously super cute. The lady who makes them is in England. She knits them as they're ordered, so it took a little bit of time to get it. Worth the wait.
 |
| She also likes this Patagonia vest. It's soft, it's great for being cold in the hospital, and it has hidden pockets. |
Bravehoods
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.
#pediatriccancer #rhabdomyosarcoma #fightlikeakid #fightlikeagirl
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