Beating the Odds and Giving Back

“No child should die in the dawn of life.” This quote by St. Jude Children’s Research Hospital Founder Danny Thomas holds incredible meaning for the family of 12-year-old Ethan Benson. 

After he was diagnosed in January 2023 with an aggressive brain tumor located on the brain stem, he spent nine months at St. Jude in Memphis, TN, undergoing treatments that included significant setbacks such as severe pressure on the brain due to the location of the rapidly growing tumor and bacterial meningitis. Now he’s in full remission and back home where he’s using his creativity and business prowess to help other kids realize their talents and raise money for the organization that saved his life.

Edge: What were the symptoms of the brain tumor?

Benson: Double vision and headaches. I like to joke around a lot, so when I told my mom I was seeing two of her, she didn’t believe me at first. Over time I felt really sick and had to lay down a lot.

Rachel Benson: His tumor grew four times its size in two weeks, and he was suddenly in critical condition and even had a seizure because of the pressure on his brain. The doctors in Omaha couldn’t start chemotherapy for 10 more days, and Ethan didn’t have 10 more days. Thankfully, my brother-in-law had suggested that we get a second opinion and had helped us apply to St. Jude.  Ethan was accepted and Omaha helped us life-flight Ethan to St. Jude, getting there to start treatment within hours or days of death.

Edge: What was a typical day like at St. Jude?

Benson: We had lots of appointments every day, but there was also a lot of fun stuff for kids and families to do like an art room, music room, a school, and a café with really good food.

Edge: What was the hardest part of your cancer journey?

Benson: There was a lot of lying around. I had lots of stomach problems too and felt nauseous a lot of the time. I’m finally starting to feel hungry again.

Rachel Benson: The last two months were radiation treatment, and he had to go under general anesthesia for 1-2 hours every day, so he couldn’t eat most of the day leading up to it. That was hard.

Edge: What else did you do to stay busy at St. Jude?

Benson: I have a business called Ethan’s Superhero Soap. I make soaps and put a toy inside to encourage kids to wash their hands to get to the toy. Since I couldn’t be in the Omaha Children’s Business Fair last spring, I made the soaps at St. Jude and my sister sold them at the fair for me, and another participant even raised money at the fair to donate to the hospital.

Rachel Benson: Two weeks after his diagnosis, when he was in critical condition, I told him he was going to go live 10 hours away at St. Jude with dad for a few months to get better. He could barely open his eyes or speak, yet with broken words he immediately asked, ‘But what…about…the business…fair?’ I just cried. The fair is one of his favorites. I told him that if he felt well enough, maybe he could still make his soaps and his sister could sell them for him. He liked that idea.

Edge: How did you come up with the idea for your business?

Benson: It’s no fun being sick, and you have to wash your hands a lot when you’re sick, so I put toys in the soap to make it fun. I buy the toys online and use tiny figures like Spiderman and Iron Man. Some kids wash their hands for 30 minutes straight to get to the toy.

Edge: How do you make the soap?

Benson: I buy soap, melt it, put the toy in the mold, pour the melted soap into the mold, and then freeze it. I can make about 25 bars an hour. I sold out quickly at the recent business fair and raised $273 for St. Jude.

Edge: What do you enjoy most about your business?

Benson: It’s fun making the soap, and I like talking to people at the business fair. Figuring out the packaging can be hard. 

Edge: Do you have ideas for additional businesses?

Benson: My school started a business club last year after seeing me run my business at the fair, so now I help other kids with their business ideas. I was going to do it last year, but then I got diagnosed with cancer.

Edge: What do you want people to know about you?

Benson: That I’m funny.

Rachel Benson: He and his dad laughed a lot to get through the hard times. He has matured through this whole experience and discovered how strong he is.

Edge: What message do you have for other kids fighting cancer?

Benson: Don’t give up. Think about what you can look forward to. I looked forward to seeing my brother and sister when I got home.

Rachel Benson: Always get a second opinion. St. Jude is worth reaching out to. Because they aren’t reliant on insurance and have a strong donor base, they can do whatever it takes to save a child’s life. Ethan currently has no evidence of disease, and St. Jude will follow up with him and treat him for the rest of his life for cancer. We are so grateful for all the people who donate, whether they personally know a patient at St. Jude or not. I’ve seen Ethan blossom and deepen his relationships with his siblings and with us. It’s been transformational for him to see the outpouring of love and support. What a beautiful gift.

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