Chordoma Foundation

Kaitlin’s Uncommon Story: Chordoma led me where I was meant to be

When Kaitlin Slepian was a senior in high school, she had an ordinary wish — to attend prom. But extraordinarily difficult circumstances stood in her way: Kaitlin had recently been diagnosed with chordoma, and her treatment schedule at Massachusetts General Hospital, far from her Arizona hometown, would make it impractical for her to participate in the quintessential teen milestone.

“I remember crying in the doctor’s office, experiencing so much sadness at the thought of missing out on the dance,” Kaitlin says. “I thought my treatment had to come before any of my own desires.” But one of Kaitlin’s child life specialists — a profession focused on improving quality of life for young people and their families dealing with cancer or other health challenges — helped change her perspective. “She heard my grief. And she empowered me to advocate for myself,” Kaitlin says. With her child life specialist by their side, Kaitlin and her dad asked her doctors if they could honor this need. The plea was successful: Kaitlin not only attended the dance that year, but was crowned queen.

David, uncommon chordoma story

Now, four years cancer-free, Kaitlin looks back on her child life specialists as among the most helpful members of her care team. “While my whole healthcare team was wonderful, it was my child life specialists in particular who helped me feel like a whole person. They’re not there to draw your blood or ask what you’ve eaten that day. They’re in your corner to hear and understand you. Especially as an adolescent, it was so helpful to have someone listen to what I felt I was missing out on,” she says.

(Read more stories from adolescent and young adult chordoma survivors: Carlie, Dani, Kate, Alex, Julia, and Emily)

Today, Kaitlin finds herself back in Boston, reaching for another milestone. Propelled by her lasting gratitude for her child life specialists, she has begun a Master’s degree program to launch her own career in that field. “My journey with chordoma gave me a sense of duty. I want to give back some of the emotional support I received that had been so beneficial,” she says.

Kaitlin is confident that her experience as a chordoma patient will help her connect with the patients and families she serves in the future. “To know what it’s like to be faced with a cancer diagnosis brings such a unique perspective. I feel a pull toward working with sick children, and it feels good to have chosen a career with such a strong purpose.”

She also hopes to pass along some of the coping skills she’s learned in the years since her diagnosis. One of her favorite stress-relief tools is a visualization exercise: “I go to Hawaii in my mind and try to immerse all five of my senses, like imagining a warm breeze and the sound of my sisters laughing nearby. It helps me when traumatic memories and what-if’s about the future kick in,” she says.

Kaitlin also credits her therapist with helping her cope with the transition from patient to survivor. “Therapy has been monumental,” she says. “I had a lot of anger, a lot of ‘why me.’ I just wanted to look ahead to the day when cancer didn’t control my life anymore.” She points to a common misconception “that when you finish cancer treatment, you’re done, and you go back to everyday life. But for me, the first years of survivorship were more challenging than the actual treatments,” she says. “There was so much rebuilding I had to do.”

Kaitlin recalls many good memories from that period of her life, too. “When I reflect back, what stands out the most are the people who supported me, particularly my parents, who fulfilled their caretaking role in such an amazing way.”

And in the end, she says, “I feel like everything happened to me for a reason, and led me to where I am today. I’m forever shaped by my experiences, and I’m excited to use them to help other people.”

Your journey doesn’t end when treatment ends, and neither does our support. Our Survivorship Initiative offers resources specifically tailored to address common quality of life issues, and can help you find the care and support needed to live the fullest life possible.

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