Engineering a miracle for Maddie

Engineering a miracle for Maddie

Growing up fast, ‘Maddie’ now has her eyes set on becoming a teenager, getting behind the wheel and a career in law enforcement

Madison Pagel is 12-and-a-half years old, that tween age when the extra six months seem really important and the best part of the school day is recess, when she can lean against the playground monkey bars, talking to her friends.

It’s also only one-and-a-half years away from the age in Michigan, where she lives, when she can apply for her learner’s permit and start taking driving lessons, “Maddie” reminds her mother, Tracy.

Tracy just shakes her head and says she doesn’t need reminding. In an instant, her mind floods with thoughts of how quickly time passes, except for when excruciatingly painful and frightening things happen. Then she feels lucky and profoundly thankful to scientists she’ll never know, and doctors as stubborn as herself, that Maddie is alive.

When Maddie was 3-years-old, she had relapsing choroid plexus carcinoma (CPC), a rare and aggressive pediatric brain cancer.

Doctors first discovered Maddie’s cancer when she was only four months old. They removed the golf ball-sized tumor and she subsequently had 12 rounds of chemotherapy. But the cancer returned and spread. There was no established cure in cases of relapse and her cancer proved resistant to three additional chemotherapy protocols.

Take Maddie home and consider hospice, the doctors told Tracy. “I told them no way. I wasn’t taking her home at 3 years old to say goodbye,” Tracy recalled. “They had to find an alternative.”

The doctors listened. They designed an onsite clinical trial for a molecular-guided therapy, which involved genetic analysis of Maddie’s tumor to identify mutations that were driving the cancer and drugs that could effectively target them. Fortunately, Maddie was being treated at Helen DeVos Children’s Hospital in Grand Rapids, Michigan, which was equipped with Thermo Fisher Scientific’s leading next-generation sequencing (NGS) and microarray technology needed for the testing.

Doctors warned Tracy that the clinical trial was a long shot that, at best, would buy Madison more time. But the clinical trial results outperformed expectations. Almost 10 years later, Maddie’s only remaining sign of cancer is a tiny mass in her brain that appears inactive.

Quotation marks
“I wasn't taking her home at 3 years old to say goodbye. They had to find an alternative.”
Tracy Pagel
Madison's mother

 

Researchers believe that Maddie’s is the first CPC case in which a molecularly targeted therapy successfully overcame the cancer for a sustained period. Her story “highlights the importance of incorporating molecular guided therapy in treatment options for such cases,” the researchers wrote for an article published in Frontiers of Pharmacology.

 

Tracy calls Thermo Fisher’s NGS technology “our miracle.”

 

Now in fifth grade, Maddie is a quiet, thoughtful girl, who seems to be comfortable with solitude. She’s quick to give her mom a hug and declare her love, one sign Tracy said, that their bond is a little different than the bond the mother has with her other two children, Avah and Hunter.

 

Maddie experienced some learning issues and has trouble with short term memory, which doctors think is related to her illness, surgery and other treatments. She loves science, especially lessons about the moon and stars, and credits her fondness for the subject to her science teacher, her favorite. She’s also fond of Ladybug, the Jack Russell Terrier that is her support dog.

She doesn’t remember much about her illness and treatment, but sometimes unexpectedly shares that she “almost died from cancer.”

Maddie has a mantra that she says to herself when facing a challenge or gets anxious about the poking and prodding she anticipates during an upcoming doctor’s appointment: “You can do this,” she says quietly, as she closes her eyes behind her glasses.

When asked what she wants to do in the future, she’s been firm on a career as a police officer for the past couple of years. She sees herself in the uniform, driving a police car, “and helping people,” Maddie says.

Her mother believes Maddie is already helping people, specifically families with children diagnosed with cancer. Families reach out to Tracy regularly through social media accounts she created to document Maddie’s cancer journey and recovery. 

She advises the parents to push back, and be stubborn, just as she was when doctors said there was nothing more they could do.

 

“Don’t give up,” Tracy urges them. “Keep looking for alternatives. Give your doctor the information on Madison’s case.”

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