When Sherrie and Michael Wells brought their son, Brady, to the pediatrician for a swollen eye, they never expected that the visit would lead them on a 10-month journey of frustration, fear and heartache. “We went to the ER when Brady’s fever spiked to 105. After a battery of tests, the doctors told us he had cancer,” Sherrie says. “We were devastated. Brady was our only child; he was just one.”
Brady was diagnosed with the rare Non-Differentiated Acute Leukemia. Sherrie and Michael threw themselves into learning what they could about Brady’s condition and formed a tight bond with the people who populated their new, strange world: the physicians, nurses and families on the cancer ward at the Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital.
“Parents whose children receive a cancer diagnosis often are understandably so overwhelmed that they can’t do anything else,” Sherrie says. “My way of coping was to make things better.” The couple brought the frustrations they had as parents to the staff, which led to conversations with the hospital administration on how some no-cost or low-cost measures would make life better for families of children at the hospital.
With the dialogue started, the couple took their advocacy to the next level. They wanted to use the money people were donating to help Brady to create a fund to help other families on the ward. They started the Hugs for Brady Fund, with the condition that any money spent at the hospital would have their approval.
First, they focused on improving the quality of life for other families: They installed flat-screen televisions, along with video game consoles with wireless remotes and games in all children’s and parents’ rooms.
Then, they looked at transportation. Like other families, the Wells struggled with moving their child with an IV. “You can’t stay in that small room. You need to walk around,” Sherrie says. “Brady was too weak to walk, too heavy to carry and too small for a wheelchair.”
They put him in a Radio Flyer wagon and placed the IV in the hitch. “It’s wasn’t very safe, but it was the only way I could have an IV pole attached to him and the wagon,” she says. “It gave us the freedom to walk and see flowers.”
Michael sketched a design on a napkin for a wagon that would allow parents to safely and easily attach an IV without asking for assistance and looked for a manufacturer. To date, about 600 of their whimsical, animal-shaped Brady Buggy Wagons have been distributed nationwide. They are now looking to distribute them internationally.
A New Goal
Brady Wells passed away one month shy of his second birthday. Despite their grief, the couple continued their mission to help children with cancer. They established the non-profit Hugs for Brady Foundation a few months later.
“When Brady succumbed to his cancer, his parents asked ‘How can we help?’” says Richard Drachtman, Clinical Section Chief, Pediatric Hematology/Oncology, at Rutgers Cancer Institute of New Jersey, who was Brady’s primary doctor. “I told them it was getting harder to fund research for pediatric cancer, but the research showed promise. When I started taking care of kids with cancer in the 1980s I didn’t expect most patients to survive. Now, I do expect that.”
Hugs for Brady focused on funding pediatric cancer research at Rutgers Cancer Institute of New Jersey. Notably, it pledged $300,000 to support studies in state-of-the-art pediatric precision medicine, which allows doctors to personalize cancer treatment and constantly adjust strategy by targeting genomic mutations in the cancer. “The research we funded has saved lives,” Sherrie says. “I’m doing virtual cartwheels.”
It also pledged $500,000 to fund the Hugs for Brady Foundation Pediatric Cancer Research Lab, directed by Peter Cole, Chief of the Division of Pediatric Hematology/Oncology at the Institute. As the state’s only dedicated pediatric cancer research laboratory, it seeks to develop treatments for pediatric cancer and reduce the toxicity of anticancer therapies.
This funding is crucial since most financial support goes to research on adult cancers, which are more common. However, while scientific findings in adult cancer rarely help pediatric patients, research into pediatric cancer can inform the treatment of adult cancers. “For example, a lot of chemotherapy drugs cross adult and pediatric boundaries, and research on the side effects of chemotherapy is often pioneered in children and then applied to adults,” Dr. Cole says.
Dr. Cole’s research seeks to make chemotherapy treatments better. “Most children get cured, but in the process of curing them, the side effects of the treatment can cause permanent organ dysfunction, so they still need to deal with the persistent effects for the rest of their lives,” he says. “We want to understand why chemotherapy side effects are more severe in some patients and how to lessen them.”
Dr. Drachtman notes the significance of Hugs for Brady supporting local pediatric cancer research. “So often, money for pediatric cancer research goes out of state, but we have a tremendous research institution here. Most children in New Jersey who have a serious illness do not have to leave the state to be treated,” he says.
In addition to the funding for research, Hugs for Brady also offers financial support to families who are faced with staggering medical bills. Much of this support assists families who are facing difficulties in paying their rent/mortgage, food, utilities and other day to day necessities.
Today, Sherrie and Michael share their advocacy with their eight-year-old twin sons, Logan and Gavin. This holiday season consider gifting a donation to help children battling pediatric cancer. There are so many ways you can donate to ease the burden of this horrific disease. From financial gifts to help with medical bills, to gift cards for groceries and cleaning supplies, to toys, crafts and games to bring some joy into their lives. In addition to contributing financially, Sherrie says people can help by registering to be a bone marrow donor and by donating blood and platelets, which is an ongoing need.
