Be Like Zach: Family turns grief into action after son’s passing

Zach Wall was a fighter. As his mother, Jenn, recalls: “He came out four weeks early at four pounds, so he was fighting from the start. He was always a resilient kid because he had to be.”

Zach was born with a range of social and emotional challenges that made growing up difficult for him, his parents say, but he never let that stop him. “He was just accustomed to, ‘you get knocked down, you come back, and you do it again.’ That’s just who he was,” says Zach’s father, Jon.

Beyond resilience, Zach was a compassionate kid who loved to laugh. He loved all animals, whether they were his own dogs or the horses he rode at his therapeutic boarding school. He was fascinated by cars and enjoyed building with Legos. Despite his social challenges, or perhaps because of them, Zach excelled at individually focused activities, like tae kwon do. He was also wildly sarcastic.

“Zach had a really good sense of humor, which he was developing from me and Jenn,” Jon explains. “When he smiled, he would light up a room. He was just a loving kid. A big hugger and always grateful when people did things for him.”

Zach also happened to be the kind of kid that made a huge deal over a hangnail, say his parents. Which is why when he complained of knee pain while home for the Christmas holiday in 2020, they had him examined by a pediatrician, who reassured Zach it was growing pains and encouraged him to continue taking Ibuprofen.

But the following month, after a different pediatrician noticed a lump below Zach’s knee and ordered an X-ray, it was discovered that Zach had osteosarcoma. Osteosarcoma is a common type of bone cancer among children, adolescents, and young adults that usually occurs in the long bones of the arms or legs. The disease occurs most commonly in teenagers, when the rate of bone growth is the fastest. This is why osteosarcoma is often misdiagnosed as growing pains, as in Zach’s case.

Immediately after hearing the news, Jon and Jenn brought Zach to Dana-Farber Cancer Institute’s Jimmy Fund Clinic, where they worked with Katherine Janeway, MD, and her team to run a biopsy and a chest CT scan. The biopsy confirmed that Zach did in fact have osteosarcoma; worse, the CT scan revealed the cancer had metastasized to Zach’s lungs, a common occurrence with osteosarcoma cancer cells. Now beyond just localized osteosarcoma, Zach’s prognosis fell from 70% to just 20% for five-year survival.

Less than a week after his diagnosis, Zach began chemotherapy, and two weeks before his 16th birthday, he underwent an above-knee amputation. Still, Zach’s spirit never broke.

“He was so used to fighting, and to finding his way, and it showed throughout his illness,” says Jenn. “He was a 16-year-old boy fighting cancer every day that he could.”

Unfortunately, the metastases in Zach’s lungs weren’t responding to chemotherapy, and a PET scan in June 2021 revealed an enormous amount of cancer growth in a matter of months. It was at this point that Jon and Jenn made the decision to enlist the palliative care team at Dana-Farber.

“The day we met the palliative care team, we had 139 days left with Zach. We didn’t know it at the time, but that’s all we would have. Having them involved and able to assist us was so helpful to Zach’s mental health, his medical care, but also to our overall well-being. It didn’t make it better, but it made it easier. It allowed us to focus on the time we had left,” Jon recalls.

For the Walls, palliative care brought an element of comfort and emotional support into the dynamic team of oncologists, nurses, and doctors already caring for Zach. While all were integral, the Walls cite Zach’s time in palliative care as the most meaningful therapeutic experience of their cancer journey.

“Zach was not a kid who liked talking to a therapist. But his PAC [Pediatric Advanced Care] social worker, who met with Zach weekly for the last several weeks of his life, always met him where he was at, with whatever he wanted to talk about,” Jenn says. “And that was really the reason we got some insight into how Zach was feeling, because as parents you can’t really ask those questions. It was very, very meaningful to us and continues to be meaningful.”

Zach passed away in November 2021 after a 10-and-a-half-month battle with osteosarcoma. He was at home with his parents and, of course, his dogs. During that time, though it was grueling, Zach never lost his sense of humor.

“Zach didn’t really shy away from his cancer. He didn’t want to hide it from anybody. He said, ‘this is who I am and I’m not hiding. I’m not embarrassed by this,’” Jon explains, recalling how, before he started chemotherapy, Zach invented his own neon yellow-green hair color called “alien glow” and dyed his hair.

In the wake of Zach’s passing, Jon and Jenn were left with something other than just sadness: an overwhelming sense of purpose.

“A lot of people get suffocated by grief and don’t want to do anything, but we were ready. We felt a purpose—one that we didn’t want but one that was incredibly powerful, and so was the obligation to fulfill that purpose by helping other families navigate similar cancer journeys,” Jon explains.

The Walls found an outlet for their desire to give back when they happened on an Instagram post by Dana-Farber in March 2022 about the Patient and Family Advisory Councils (PFAC). The purpose of both councils—the Pediatric (PPFAC) and the Adult (APFAC)—is to allow patients, providers, and family members the chance to infuse their real-life experience into initiatives that can improve hospital programs, policies, and overall quality of care at Dana-Farber.

“We thought it would be a great way for us to give back, and we were right,” says Jon. “It’s a great way for parents or families or anybody that’s gone through this to help offer input in making the journey better for future families and patients.”

Right now, PPFAC is hard at work evaluating the current scheduling tool for appointments at Dana-Farber’s Jimmy Fund Clinic, and also determining the strength of transitioning programs from one stage of cancer care to the next, whether treatment to survival or treatment to end-of-life.

Around the same time Jon joined PPFAC, the Walls also started a nonprofit called Zach’s Bridge aimed at providing peer support to families navigating advanced pediatric cancer, an element the Walls say from personal experience is critical but surprisingly hard to find with terminal diagnoses. Zach’s Bridge therefore matches parents with trained peers who provide comfort and guidance, and who help bring the focus away from the tangle of logistics and back to what truly matters: spending time with your loved one.

“We never want people to give up hope, but we want them to understand what’s going to happen and be prepared for it,” Jon explains. “It won’t change the result, but it will give them back the gift of time.”

When asked about their hopes for their involvement in PPFAC and Zach’s Bridge, their answer is simple: “We just want to make the journey easier,” Jon says. “If we can provide input to make the experience better—the medical and in-clinic experience, the social and emotional, the support, the resources—if we can make it easier for the next family, that would be amazing.”

Today, Jon and Jenn Wall try to live their lives by a certain set of guidelines: Zach’s Rules for Life. Each item on the list is a lesson learned from Zach along the cancer journey, whether it’s to turn grief into action or just to keep moving forward, and they allow Zach’s memory to live on.

“When we share these rules with people, and we tie each one back to a piece of Zach, we’re able to tell the complete story of who he was,” Jon says. “Not everybody likes to talk about the child they lost and their journey; we love to do it. Because it helps people know Zach and, through that, can help them along their own journey.”

With Zach’s rules in mind, the Walls are committed to continuing to defy cancer every day by giving back to the Dana-Farber community through PPFAC, and by being a resource for families dealing with terminal diagnoses through Zach’s Bridge.

“If you can look in the face of cancer and keep fighting it, even knowing what you’ve gone through and what you could go through, that’s defying cancer. And in our eyes, that’s what we’re continuing to do, just in a different way,” says Jenn.

Jon adds: “Cancer is a long-term commitment to waking up every day and pushing forward, but in the little moments, there are things you can do to touch a family or a patient and change somebody’s journey to make it a little better.

We miss him every single day. And we can’t bring him back, but what we can do is honor him, take what we’ve learned from him, and try to help that next family.”

Zach’s Rules for Life:

1. When someone has cancer, run toward them. Check on them. Don’t stop. Stay with them.
2. Be compassionate and have empathy.
3. Move with urgency. Tomorrow is not a guarantee.
4. Grief gives you choices. Don’t let grief suffocate you. You can be sad, but turn that grief into action.
5. Keep moving forward.
6. Tell those you love that you love them. Hug them.
7. 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.
8. Sing if you want to sing.
9. Stay busy doing lots of things. Find your passions and go deep. Learn everything you can about them and then learn more.

Help support these efforts by joining The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.