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Meet Kaitlyn

Kaitlyn

If you ever want to visit Kaitlyn Dorman, you’ll have no trouble finding her house.  Just walk through her neighborhood until you find the one with music pouring out of it, the joyful sounds of keyboard or guitar.  Knock on the door, and you’ll be greeted by a 12-year-old girl with long brown hair, sparkling eyes, and a lively smile.  Kaitlyn is home.

Kaitlyn can hardly remember a time when music wasn’t a part of her life.  Her grandfather plays the piano.  By the time she was five years old, she was following in his footsteps.  She has perfect pitch.  Play a note, and she can name it for you.  She can even identify the pitch of the teakettle when it sings in her family’s kitchen.  Nowadays she leads a life busy with school, friends, family, community service, and, of course, the music she loves.  But Kaitlyn’s life hasn’t always been so serene.  When she was nine years old, her family discovered she had cancer. 

“I woke up with tremors in my left hand,” Kaitlyn says.  “At first I didn’t think much of it.  I thought I was cold, or low on sugar.”  Over the next few weeks, the tremors got worse.  Kaitlyn’s hand grew weak.   “I was taking a glass of soda down to the basement to watch TV with my brother, Ryan, when I dropped the glass.  I thought: Oh, no, I’m in trouble now.”

The trouble was far worse than anyone in the family suspected.  Kaitlyn’s mother, Mary, took her to the doctor, who performed a neurological exam then sent her for a CT scan.  “We went right to Johns Hopkins,” Mary says.  “The doctor told us we would need a major hospital.”  She remembers the moment when she heard the results of the scan.  “Kaitlyn had a tumor in her brain stem.  All I could think was, what do we do now?  I wanted to know exactly what we should do.”

A few days later, the Hopkins doctors performed a biopsy.  The bad news, they told the Dormans, was that the tumor was cancerous: pilocytic astrocytoma.  But there was good news.  In 95% of the cases, this type of cancer was easily cured.  After a regimen of chemotherapy, Kaitlyn would be fine. 

“How do you tell a nine-year-old she has cancer?” Mary asked.  At first the family was reluctant to share the news with her, but eventually Kaitlyn had to face it.  She kept up her positive attitude.  “I never let cancer define me,” she said.  “I had cancer, but it wasn’t who I was.”  She also kept up her music lessons.  “I knew how quickly you can lose your skills if you don’t keep practicing,” she says.  “I love music.  I was determined not to let that happen.”  The piano teacher kept coming to her house, even when Kaitlyn’s left hand grew so weak, she could only play with her right.

Despite treatment, Kaitlyn’s tumor progressed.  She lost movement in her left hand, her left side, and finally even her ability to walk.  “I was never scared,” she says.  “I just thought it was unreal.  I kept wondering, when will I be able to move again?”  She had, it turned out, one of the rare forms of the disease, the 5% that isn’t easily cured.  The family needed other options.  “We could be more aggressive with the chemotherapy,” Mary explains, “but it was hard on her growing body.  Luckily we were at Johns Hopkins.”  At the time Hopkins was one of only five hospitals in the nation participating in a clinical trial for a new kind of drug for Kaitlyn’s cancer.  The family said yes to the experimental treatment—and held its breath.

“The results,” Mary says, “were dramatic.  Miraculous.”  Almost immediately, Kaitlyn began to get her strength back.  Through it all, she maintained her optimism and determination. “I remember the day I lifted my arm the whole way.  I thought to myself, I can do this. Don’t stop me now!”  Soon she was insisting on going back to school.  “I told my parents, I’m going back and there’s nothing you can do about it.”  Mary smiles. “We couldn’t stop her.” 

Kaitlyn never finished the clinical trial.  The doctors cut it short when they realized the treatment was affecting her liver.  But the drug had worked its magic.  “Even off medicine,” Mary says, “the tumor continued to shrink until it had no functionality at all.  The trial had worked.”

Soon Kaitlyn was back to her normal life with no residual effects from her illness.

“I used to think you had to be old to get cancer,” Kaitlyn says,  “but I saw kids at the hospital even younger than me.”  Her experience taught her the importance of new breakthroughs in medicine, and now she uses her musical talent to raise funds for pediatric oncology research.  “I want to help,” she explains.  “I know what cancer’s like.  Children shouldn’t have to go through it. Nobody should.”  She’s raised money at numerous events and even played for Congressional lawmakers in the Senate building.

If you go to visit Kaitlyn, don’t be surprised if you find her at the piano, playing the music she loves, singing songs she has written.  Nearby is a rack with guitars, a ukulele, and a banjo.  She has a brilliant smile and a delightful sense of humor.  “I want to learn how to play trumpet,” she says with a grin, “and start a band.”  Mary smiles.  If that’s what Kaitlyn wants, she’ll make it happen.  There’s no stopping her.

 

 

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