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Arden loves school. This summer, she marked her milestone 5-year birthday with a Disney Princess themed party. For Halloween, Arden and family all dressed up as the characters from Beauty and the Beast. Arden was Belle, of course.
For her parents, watching Arden experience all these regular traditions and developmental milestones of life has been an amazing gift.
When she was 16 months old, the usually healthy Arden suddenly experienced a stomach bug and a series of low-grade fevers over the course of a week. Arden’s daycare called her parents concerned about her health, and they took Arden to see a doctor. 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. Megan remembers seeing the images on the screen and knowing something wasn’t right. Arden’s bloodwork came back abnormal. Arden’s parents were told she needed an MRI. She was transported via ambulance to Children’s Hospital of Philadelphia (CHOP) in the middle of the night. But, no one told the family where they were going until the elevator doors opened on the oncology floor in the wee hours of the morning.
Arden, a healthy 16 months old, now had neuroblastoma.
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.
“If it weren’t for Alex, there wouldn’t be any Ardens,” said Megan.
Information provided by Arden's mom, Megan
Updated November 2023
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