Parents Raise Osteosarcoma Awareness and Turn Grief into Action
After Jenn and Jonathan Wall lost their 16-year-old son Zach to bone cancer, the experience ignited a passion to provide support to families affected by the disease. 

“Our goal is to honor Zach’s legacy and to celebrate his life in a way that is meaningful. We really do think that’s what he would want.”

Jenn Wall

Zach Wall loved many things­—riding horses, hanging out with his dogs and fishing, to name a few—but one of the 16-year-old’s overriding passions was supercars. His favorite was the Koenigsegg Jesko. When it came to automobiles, recalls his father, Jonathan, Zach was “an encyclopedia of detail,” rattling off facts and figures about a world he happily immersed himself in. That enthusiasm extended to video games like the Forzasimulation racing game series. The last Forza installment Zach played was Forza Horizon 5, which he downloaded the day before he passed away from osteosarcoma on November 5, 2021.

Less than 10 months earlier, in January 2021, Zach was diagnosed with the disease. The doctors told his parents, Jenn and Jonathan Wall, that the cancer had already metastasized to his lungs. The Walls sprang into action, researching osteosarcoma and exploring treatment options. They consulted with Jenn’s father, a retired pediatrician. And Jenn, who has a master’s in healthcare administration and has spent most of her career managing medical practices large and small, leveraged her knowledge of the healthcare system to advocate for Zach. 

Zach underwent a course of chemotherapy, had a successful above-knee amputation in April and started again on chemotherapy shortly afterward. 

“It was great that it was an Olympic year because he became really interested in watching the Paralympics,” Jenn says. “He wanted to become a Paralympian.” 

The Walls, who are determined to share their personal story of osteosarcoma far and wide, did everything in their power to create happy moments for Zach. 

“From spring on, every day was as good as possible,” Jonathan says. “If Zach wanted to eat something, we ate it. If he wanted to go there, we went there.” 

Whether that meant he was getting back on a horse and riding with a prosthetic leg or holding the 2018 Red Sox World Series trophy, they were making memories. 

Turning Loss into Legacy

Over the Fourth of July weekend, an adverse drug reaction landed Zach in the ICU with encephalopathy, or damage to the brain. Soon afterward, the scans revealed more metastatic growth. With lung resection off the table because of the tumors’ proximity to blood vessels and airways, Zach tried a three-week course of radiation, followed by a brief course of targeted therapy. But his final PET scan in mid-October showed that the cancer had spread everywhere. Zach was in hospice for less than 10 days before he passed. 

Jenn and Jonathan reviewed Zach’s autopsy results with Dr. Katherine Janeway, his pediatric oncologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, and a member of OSI’s Strategic Advisory Board. The autopsy was “part of us wanting to help other families,” Jenn explains. “If our experience could lead to one family not having to go through what we’ve gone through, that would be a win for us.” 

Research autopsies like Zach’s could lead to breakthroughs in osteosarcoma treatments and even contribute to a cure. 

The Walls’s main goals in future years are to support families grappling with the disease and raise osteosarcoma awareness. They want to serve as parent resources, engaging in parent-to-parent conversations to lessen caregiver overwhelm. They know all too well what a roller-coaster osteosarcoma can be.

“We feel that our efforts are best put toward bettering the patient experience,” Jenn says. “Our goal is to honor Zach’s legacy and to celebrate his life in a way that is meaningful. We really do think that’s what he would want.” 

Facing osteosarcoma has left a profound mark on the Walls. Jenn, who volunteers for the Massachusetts Department of Children and Families, is thinking about going back to school to become a social worker. She is interested in working with kids with social and emotional challenges, like Zach, who had ADHD. 

Jonathan reflects, “I’m fundamentally changed. I’m much more conscious of how I interact with people. It gives you a greater sense of compassion, empathy, purpose, prioritization and conviction.” 

The Walls keep Zach’s 9 Rules for Life hanging up in their home as a visible reminder of who they want to be. 

1. Be Like Zach, and Keep Moving Forward.

2. Find your passions and go deep. Learn everything you can about them and then learn more.

3. Give back to others as much as you can. Share. Volunteer.

4. Love and surround yourself with animals.

5. Stay busy doing lots of things.

6. Tell those you love, that you love them. Hug them.

7. Sing if you want to sing.

8. Smile, a lot. Tell jokes, good ones, bad ones, stupid ones. Laugh a lot.

9. If you get angry, and you will from time to time, put it behind you and get back to life. It should take about 20 minutes or so. Apologize if needed.

 “We miss him every day, but that grief propels us forward,” Jonathan says. “We’re turning grief into action.” 

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