By: Trish Adkins
Arden loves to giggle. Ask her anything—her favorite color, her favorite thing about school, her favorite dance moves—the response is a giggle and a bright, beautiful smile that lights up her face.
She is very serious about what she wants for Christmas, though: a Barbie dreamhouse.
For Arden, who is by all appearances a regular 5-year-old, life has not been a total dream.
She was just over a year old when a stomach bug hit. It seemed to go away, but a series of low-grade fevers remained. Her parents, Megan and David, would get calls from daycare. It seemed like a normal childhood virus. At first, the pediatrician thought Arden was still bouncing back from a stomach bug and the low-grade fevers were not out of the ordinary.
Then, the fevers continued the following week. Daycare called again. Arden’s parents took her back to the pediatrician, who felt her belly and thought her spleen had enlarged. Arden was brought straight to the pediatric ER, where she had an ultrasound.
The images on the screen didn’t look right. Arden’s bloodwork came back abnormal. An MRI was ordered and Arden, who was just 16 months old, was transported via ambulance from her community hospital in South Jersey to Children’s Hospital of Philadelphia in the middle of the night.
No one told the family where they were going.
Then the elevator doors opened to the oncology clinic.
Later that night, Arden would be diagnosed with neuroblastoma, a solid tumor of childhood most common in children under three.
The days that followed were a whirlwind of tests and treatment planning. Treatment would be at least 18 months long.
Dr. Grossmann, a pediatric oncology fellow, was guiding the family through the process. Megan made an agreement with Dr. Grossmann that, regardless of the challenges Arden faced, he would always emphasize the little miracles throughout Arden’s treatment.
One little miracle, which turned out to be a big miracle, was a promising clinical trial available at CHOP, where Arden was being treated, led by Dr. Yael Mosse. Arden was a potential match, but needed more testing to determine if the trial was right for her. Testing revealed that Arden had high-risk neuroblastoma with the ALK mutation.
Arden met the criteria to enroll in the trial.
And it worked. As the final portion of her treatment, which lasted more than three years, Arden completed taking a year of the trial drug, lorlatinib, in May 2023. In September 2023, Arden again celebrated “No Evidence of Disease.”
Megan credits research with saving Arden’s life.
Today, Arden will tell you (with a giggle) that she loves school. She was Belle for Halloween and just went to see Disney on Ice. She loves making magic potions. She wants to help people someday, the way she was helped.
For her parents, watching Arden experience all these regular traditions and developmental is nothing short of incredible.
“If it weren’t for Alex, there wouldn’t be any Ardens,” said Megan.
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