Kids often rely on their parents for inspiration, but for Kevin and Becky McAvoy, it’s their 5-year-old daughter, Avery, who provides the spark.
Avery was less than a year old when she was diagnosed with metastatic neuroblastoma, the most common type of cancer in infants. Her cancer contained an anaplastic lymphoma kinase (ALK) mutation.
The ALK gene is designed to tell your body how to make proteins. Because Avery had the ALK mutation — a rare condition found in just 10 percent of children with neuroblastoma — her tumors were more aggressive, and she also had a more than 50 percent chance of a relapse.
“As a parent, all you can do is hold their hand and hope for the best,” says Kevin.
Avery’s diagnosis came in 2014, after the McAvoys brought her to a local hospital because of a high-grade fever and bruising around her left eye. Blood tests alerted doctors that something wasn’t right, and then an ultrasound revealed she had a large tumor pressed up against her spine.
The McAvoys came to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, where Avery was placed under the care of Dr. Suzanne Shusterman. Avery underwent chemotherapy and radiation before doctors surgically removed her tumor. The operation was a success — the surgeon removed 100 percent of the tumor — but, she still needed to have intensive treatment following surgery to try to prevent a relapse.
Avery was once again given high-dose chemotherapy before receiving a stem cell rescue, a procedure that reinfuses a patient with their own stem cells to replace those that were destroyed during treatment. She then underwent immunotherapy before being placed on the drug Crizotinib, an ALK inhibitor often prescribed for lung cancer.
“We wanted to do everything that we could to make sure that Avery’s cancer didn’t come back,” Dr. Shusterman explains. “Outcome for aggressive neuroblastomas like Avery’s has greatly improved over the past two decades, but there is still a lot of room for improvement. Fortunately, new treatments and clinical trials are constantly being developed.”
Avery completed her three-year cycle of Crizotinib in September 2018, and since then, she has remained in remission.
“She’s such a strong kid,” Kevin says. “There were times when she wasn’t doing well, and that doubt would creep in. But when I looked at her face, all of the ‘what ifs’ were pushed away.”
Last year, Avery started kindergarten — and when she’s not at school, she enjoys arts and crafts, playing with her big brother, Brennan, and swimming. The McAvoys are also active fundraisers for Dana-Farber; 2018 marked Kevin’s fourth Pan-Mass Challenge, Becky is a regular in the Boston Marathon Jimmy Fund Walk, and last year, Brennan completed his first PMC Kids Ride.
It’s all for Avery, who has been their source of inspiration throughout.
“We’ve been so heartened by her success,” explains Kevin. “We feel like she’s won this battle, and now we’re excited to watch her grow up.”
This blog post originally appeared on Insight, Dana-Farber Cancer Institute’s blog.
Learn more about neuroblastoma from Dana-Farber/Boston Children’s.