Cincinnati Family Magazine

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December 7, 2022

Voicing: A Q&A with Children Touched By Cancer

With more than two classrooms full of students diagnosed with cancer each day, chances are that one of them will be a neighbor, a teammate or a friend.

But there’s also a good chance that you’ve never had the opportunity to get to know one of these brave kids and hear a firsthand account of their experiences. So I sat down with three young cancer patients to find out what having a life-threatening illness is really like.

Lily is an 8-year-old third-grader from Franklin. Her back pain was attributed to a pulled muscle from gymnastics until she woke up screaming and couldn’t stand on her own. After a multitude of tests and misdiagnoses, her family got the news. Lily recalls, “My parents started crying, but I didn’t because I didn’t know. I was like, ‘What’s leukemia?’”

Elise is a 14-year-old ninth-grader from Franklin who thought she was sore from playing travel soccer. When her father found her crawling to the bathroom because she didn’t have the strength to walk, they knew it was more than a sports injury. Elise had acute lymphocytic leukemia. “My parents were fine in front of me, but I’d hear that my Mom would cry privately and my Dad would cry on the way to the hospital,” she says.

Christian is a 17-year-old high school football player from Chapmansboro who was “in my junior year of school, working and playing football. I was in the best shape of my life.” Last year, he lost consciousness on the football field and was diagnosed with an extremely rare form of cancer, hepatosplenic gamma-delta T-cell lymphoma.

Do you ever wonder “why me?”

Lily
It was always in my mind that it wasn’t fair, but I think I’ll get better though.

Elise
I believe there’s a reason I had it. God has a plan, but I don’t always know what it is. But I’m the kind of person who thinks crying won’t get you anywhere, so suck it up. My dad and I are a lot alike that way.

Christian
I questioned a lot of “why,” but then I just had to rely on faith and know that God does everything for a reason.

What’s the worst part of treatment?

Lily
When I was on steroids, I was crazy and yelling, “Where’s my food?!” I’d wake up at 2 a.m. to eat. Chemo made my hair fall out and my stomach hurt so bad. We filled a whole trash bag with hair when it started falling out.

Elise
I love being with my friends, so it was hard being quarantined and not being able to see them.

Christian
Radiation was the worst. It eats you up inside. After three days of it, they had to wheel me in.

What is it like to be bald?

Lily
Wigs are itchy, and I don’t wear hats that much because I’m used to being bald. Kids ask if it’s contagious. Some of them make fun of me and whisper, “She’s bald!” at the mall or even at school. I can still hear them because they are nearby and it makes me feel unhappy. I’d rather they just ask.

Elise
I didn’t wear a wig because they’re itchy. My mom let me wear big earrings that I normally wasn’t allowed to wear because I wanted people to know I was a girl. If kids stared, I’d explain it. If an adult stared, I’d stare back at them like, “Are you that rude??!!”

Christian
I think it’s harder on girls, but everyone gets self-conscious, so it wasn’t easy on me. My dad shaved his head, too.


How did your friends react?

Lily
They were so sad and thought it wasn’t fair!

Elise
They’d make me movies of themselves singing Christmas carols or just having a conversation, so I could watch it in the hospital. My mom decorated my hospital room with themes like Mexican Day, so my friends would visit with maracas and wearing sombreros. I had close friends and friends who just visited once in a while … you need both.

Christian
My friends stepped up and did everything to help us. They were so faithful about visiting and keeping my spirits up. If they weren’t there, I’d still get cards every single day. They had benefits to raise money for my family because my mom had to take a work release from her job to take care of me.

How did your siblings react to everything?

Lily
My little sister (who is 6) has a hard time understanding what I’m going through. And she’s sometimes jealous of the attention I get because I get a lot more attention than she does. But I’m sick.

Elise
Jared is my big brother, so he wants to protect me from everything, but he can’t. We tried to trick the doctors into thinking he was the patient. He’d put on a hat, and we’d switch sweatshirts to see if the nurse would try to IV him. And we’d race tricycles down the hospital hallway.

Christian
My little sister was living with my grandparents for a while when I was at the hospital, and my mom was there with me. It wasn’t a normal life for her at all. She took it like a champion.

Do your parents treat you differently than before you got sick?

Lily
When I’m grumpy, my parents understand that it’s the steroids talking and it’s not my fault.

Elise
I think if I talked back or was snappish, I wasn’t punished because they knew I was going through a lot. They loosened up on my brother Jared, too, because he was worried about me.

Christian
They tried to make me feel as normal as they could because life wasn’t normal. We lived in the hospital! Everyone sees you as different, and you just want to be a normal kid like before it happened.

What do you miss about “normal” life?

Lily
I miss soccer because I used to play a lot. I want to play again when I’m totally better.

Elise
If anyone is sick, I can’t go to school until I’m off immunosuppressant drugs. And it’s hard for me to run, so I don’t play soccer anymore.

Christian
Right now, I can’t play football. I’m not strong enough.

How has having cancer changed you as a person?

Elise
Little things don’t phase me anymore, and I think drama is stupid. When other girls are getting excited about who’s going to homecoming, I’m like, “whatever.” I feel stronger, like I can do anything now. A biology report? I’ve done this, so I got that! I’m also closer to my family than before. We had a whole year of being together in the hospital and working as a team.

Christian
The little things that people don’t notice stick out for me now. Like being around your family. Most teenagers drive off and try to get away. But I enjoy spending time with my family.

What does the future hold for you?

Lily
I want to be a nurse… or a waitress at Logan’s Roadhouse. Because they have the best bread.

Elise
I want to be a teacher for young kids. Or a doctor/missionary to help people in other countries. I guess something that involves kids and medicine.

Christian
That’s a tough question since I missed my junior year of school and haven’t taken my ACT yet. My dream is to do some mission work, some sort of doctoral work in secluded areas where they don’t have access to health care.

What should people know about kids with cancer?

Lily
Kids with cancer get tired a lot. But we’re gonna get through this. We’re going to be OK.

Elise
If you have friends with an illness, remember that caring is not treating a person like someone with cancer – that’s pity. Caring is treating you as you. We don’t want pity – we just want people to care.

Christian
I would really like to praise the nurses, care partners and doctors at Vanderbilt. They were amazing. And I want to pray to God because he is definitely the reason I’m here today. Cancer has greatly increased my faith.

Deborah Bohn is a mother, author, fitness expert and resident of Franklin. She is a frequent contributor to this publication.

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