By: Trish Adkins
When Lakelynn was first diagnosed with a rare tumor, her family was given no options for treatment. Then genomic testing revealed that Lakelynn’s tumor harbored an NTRK gene fusion. Within 48 hours of learning more about Lakelynn’s diagnosis, the family headed to Boston to see Alex’s Lemonade Stand Foundation (ALSF)-funded researcher Dr. Steven Dubois.
Dr. Dubois was leading a trial for a drug called larotrectinib, which showed promise for kids like Lakelynn, who were battling cancer with the NTRK fusion. The trial worked. Lakelynn’s tumor shrunk and remains stable. Now, Lakelynn is 6 years old, her tumor is stable, and she continues on the trial medication.
Every day, 43 children are diagnosed with childhood, and every day, ALSF-funded researchers are working to make more stories like Lakelynn’s a reality.
On this National Cancer Survivors Day, we want to share with you four more stories of children who have survived because of research. Meet Edie, Zach, Taylor and Eden:
Today (June 7), Edie is celebrating National Cancer Survivors Day and her 11th birthday, thanks to a breakthrough made possible by an ALSF-funded researcher.
When Edie was 6 months old, she was diagnosed with stage IV neuroblastoma. Over the next several months, Edie had 14 rounds of chemotherapy and countless surgeries and procedures. Edie spent more time in the hospital than she did at home.
She relapsed three times before she ended up at Children’s Hospital of Philadelphia (CHOP) and under the care of ALSF-funded researchers Dr. John Maris and Dr. Yael Mossé. They discovered Edie had the hereditary form of neuroblastoma, a rare type of neuroblastoma that is driven by the ALK gene. Edie started a trial drug called Crizotinib.
Within 28 days, Edie’s cancer disappeared.
But that was not the end of the story for Edie’s family. Her mom, Emily was diagnosed with the same type of cancer. She received the same treatment and today, like Edie, is cancer-free.
“My husband, Nick, always tells people that without ALSF, he would not have a family. And it's true,” said Emily.
When Zach was 5 years old, he was diagnosed with anaplastic large cell lymphoma (ALCL), an extremely rare type of non-Hodgkins lymphoma. While still in treatment, Zach’s lymphoma relapsed. As Zach became sicker and his prognosis worsened, his parents felt out of options. Traditional chemotherapy was not working and, in fact, was making Zach sicker. Zach was quickly running out of options.
Doctors told Zach’s parents about a promising clinical trial using a drug called Crizotinib, the same drug that helped Edie. They thought this new treatment could work for Zach. It was the last sliver of hope for Zach. His parents took the risk. Within a few days, Zach was running up and down the halls of the hospital.
Zach’s cancer disappeared.
Today, Zach is still on Crizotinib and cancer-free. He’ll turn 15 years old this summer and according to his mom, he is just living a regular teen life.
We first introduced you to Taylor when she was a student at the University of Northern Alabama. Taylor was just 11 years old when she was diagnosed with osteosarcoma, a type of bone cancer. Treatments seemed to work for a little while, but then the cancer spread to Taylor’s lung. The lung was removed. Taylor enrolled in a clinical trial at Texas Children's Hospital that was made possible by an infrastructure grant from ALSF. Her family waited, desperate for a cure.
Now, 14 years after her diagnosis, Taylor is cancer-free, a pediatric nurse in Alabama and just celebrated her 1-year wedding anniversary.
“There is no telling who I would be if I hadn’t gone through that,” said Taylor.
Eden was just 10 years old when she was diagnosed with a tumor so rare that doctors did not have a clinical name for it. Without a name, Dr. Jennifer Foster, Eden’s doctor, had to turn to a clinical trial for Eden. Eden enrolled and then later moved onto standard radiation treatment.
After 4 years of battling childhood cancer, she was declared cancer-free in March 2019. Today, Eden is 15 years old and spends time dancing, being a regular teenager and advocating for childhood cancer research by fundraising for ALSF. She also goes to Washington, D.C. to advocate for more childhood cancer research to lawmakers.
Eden offered this advice to other teens going through cancer treatment:
“Stay strong and you’ll get through it. I’ve done it once and I did it a second time so you can do it, I know you can. Keep having your faith and keep doing what you’re doing to help get through it.”
Help ALSF Fund Safer, More Effective Treatments
On National Cancer Survivors Day and every day, you can make a difference for children with cancer by donating to research that is searching for safer, more effective treatments. Donate today to help more kids like Edie, Zach, Taylor and Eden survive.