Ep. 52: The Story of Levi




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When Levi was only two years old, a brain tumor was discovered. His parents brought him into the hospital for testing after he was inexplicably sick for several weeks. In this episode, mom Kara shares what it was like to get that life-shattering news and to send her toddler off into intensive surgery to remove the mass.

Although the surgery was life-saving, it had its own major repercussions for Levi and his body’s functionality. Even now ten years post-op, Levi requires medications and interventions to keep him alive and well.

My Thoughts

When Kara’s toddler Levi fell sick, she thought it was a run-of-the-mill virus. Afterall, this wasn’t her first rodeo; Levi’s older brother was four years old, and Kara was ten weeks pregnant with their newest addition.

When days turned into a week and then two of vomiting, pain, and no fever, Kara knew something was off. After several dismissive doctor’s visits, Levi was finally admitted to the local hospital. After several scans, the doctors brought Kara and her husband Dan into another room. They told them, “We found a mass on your son’s brain. We want to transfer him to a better hospital to give him the treatment he needs.” Kara told me that at that moment, their world shifted. It’s the nightmare every parent fears, and they found themselves living it. She said,

“I remember the kind of crying that I did that day was something that I don't know if I've ever repeated. It was devastating, so devastating.”

Two months, a few surgeries, and a lot of physical therapy later, Levi was released from the hospital cancer-free. One might assume he could skip off happily into the sunset with his thrilled family and live happily ever after, but such is not the case for many brain cancer survivors. Because of where the tumor was located and the surgery it took to remove it, Levi relies on many life-sustaining medications to help his body do what it can no longer. One such medication is growth hormone given through an injection (read: needle). Of it, Kara remembered:

“When I was reading the pamphlet on this medication, there's big letters that say: may cause growth of pediatric brain tumors. And we were in this place where this medication is not optional. He will not grow without it. And yet it's known for causing brain tumor growth.

The fear of regrowth of a brain tumor is a real one. Every six months, and then every year as he got older, Levi has had an MRI to check that he is still cancer-free. During the interview, Kara told me she is a glass-half-full person, and she hasn’t felt like his cancer will return at any time. But what has scared her, is the amount that Levi relies on his medications and what would happen if they didn’t have access to them. This fear became real at the beginning of the pandemic when there were shortages and many families struggled to give their children the medical care they require. She said,

“There’s always that little bit of terror that’s just part of our reality.”

That resonated with me so much, and probably does for all families listening/reading. Having a child with life-threatening complications makes the possibility of their death impossible to fully ignore. It’s always there. For Kara, it’s Levi’s reliance on medications. For us, it’s Kimball’s cervical spine and the possibility of injury. It could be anything, and regardless of the details or specifics, the weight of that fear is heavy. Kara’s conclusion was great advice for all of us navigating life with fear:

 “It's like a wildfire. If you indulge into that I think it really can start to get out of control. But I do think that we have to learn how to actually just live with it and to allow the fear and the terror to be there but not let it consume us.”

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a


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68: Dipping My Toes into Educational Advocacy