Do Good

By Amy Senk

It began with a turtle nightlight that created magical green stars that seemed to have healing powers. Or maybe it began earlier, when a multitude of colleagues pooled their sick and vacation days to give Audra Wilford a year’s paid time to take care of her child with cancer. But as Audra sat with her son during those weeks in 2011, when he was in and out of the ICU, the spark of the idea for the MaxLove Project took root. Today, the nonprofit serves about 1,200 families every year through live events like cooking classes and a free app that offers a safe community for families facing childhood cancer.

Audra entered that labyrinth without warning. Max, then 4 years old, was having morning headaches and vomiting, but his doctor thought it was sinus infection. One day, his school called to say that he couldn’t walk and was falling over. When he later fell off his bunkbed ladder and couldn’t stand up, Audra asked her husband to intervene.

“You need to call the pediatrician because I think the pediatrician thinks I’m this crazy mom,” she told him. His call worked. An MRI was scheduled for two days later. “I thought sure he had an inner ear infection or something really gnarly going on that was intense and persistent,” she says. “Maybe he needed ear surgery or something.” At the hospital, a physician pulled her aside and asked her to sit down.

“I’d seen the sit-down on TV shows,” she says. “I know when they tell you [to] sit down, they have something to tell you. They said, ‘Your son has a lifethreatening condition.’” Immediately, she and Max were in an emergency ambulance, headed to CHOC (Children’s Health of Orange County). “I was thrown into the world,” she says. “We were surrounded by nurses and a chaplain and got in the ambulance and went up to CHOC for emergency surgery.” Max had a brain tumor, and while the first surgery prevented what was sure to be a fatal brain hemorrhage, surgeons were unable to remove the entire tumor. Had they waited, she learned later, he would likely have died, with seizures and worse only days away. There was no time for second opinions, no time for WebMD research. The fear was intense and overwhelming, and the situation was incomprehensible at first. “It’s slow disclosure because your brain will only take in so much,” she says. “You’re coping to survive. It was two-and-a-half weeks into it and we’re in the ICU still, and I look at our case manager and I asked, ‘Is this … cancer?’ And she said, ‘Oh, mama, yes…’ But no one had used the word with me. It was quite a process of coming into acceptance of our situation.” Max was in the hospital for nearly a month. An oncologist had come to talk to them about starting treatment right away, as well the need for physical and occupational therapy. That’s when the human resources department called to tell Audra she had no more sick leave, no more vacation days. She could take unpaid leave, but her husband was in graduate school, and she was the main earner. She carried their insurance.

“It was devastating,” she says. “I was sitting there in the ICU and didn’t know how this was going to work. It’s such a common story, unfortunately.” At the time, Audra was the director of student life at Saddleback College, and her colleagues came to her rescue.

“They put together a crisis leave program,” she says. “Within days, they had collected enough vacation and sick time to give me one year, fully paid, with insurance [and] benefits, to take care of Max. It was just incredible. People from the groundskeepers to the president and everyone in between gave to it.” She remembers sitting there filled with awe and gratitude and thinking, “This is going to get paid forward. I don’t know what’s going to happen, but I have to find a way to help other people going through this.” It was, she says, her first inkling of a mission of giving back.

“I see the need everywhere, left and right now,” she says. “And I’m a doer. My coping through this was by doing and caring and investing. That’s how I coped with my own pain. I needed to do something about these problems I was seeing.” But first, Max needed her.

“Our surgeon on day two said, ‘Treatment is not going to work for Max. … As soon as his quality of life suffers, … please agree to stop treatment. Let’s just focus on his quality of life.’ He was saying Max won’t survive.”

Her husband thought he meant end-of-life care. “I heard, ‘You’re giving me something to do — thank you!’” she says. The doctor’s bleak news gave Audra a focus, a goal that was not a cure but rather something realistic and attainable — if she could figure it out. She quickly embraced integrated care, which she describes as a way of supplementing standard cancer treatments of chemotherapy, radiation, and surgery with acupuncture, whole foods, stress management, physical activity, quality sleep, and more. “That blending gives the patient and family the best chance of having good days, the best chance of thriving, the best chance of feeling good,” she says. “That was our goal. It wasn’t a cure because we weren’t given that sense that a cure was for Max. But quality of life was the goal, and that seemed to be attainable if we could find it.”

With a 4-year-old, they decided to begin with focusing on the language they used to talk about his cancer, to find ways to use words to empower him. Normal cells were the good guys. Cancer cells were the bad guys, and the bad guys wanted to get to his brain because his brain is awesome. And the good guy medicine and superpower medicine — chemo and broccoli — helped the good guys in the battle. “We had him working with Play-Doh, where he would make the tumor with Play-Doh, and then he would obliterate it with other Play-Doh, kind of like play therapy,” she says. “What I found as a parent was I actually needed that narrative shift. I needed the good guys and bad guys at that point in time.” The family changed their diets by eliminating added sugars and eating basic, whole foods. They hired a physical therapist to work with Max at local playgrounds. He joined a karate class for kids with special needs that got him standing and walking again, and he tried equine therapy. Bedtime, for the first time, became a thing. And acupuncture, the days before and after chemo, had amazing results. His medical team seemed skeptical at first, warning that if his healthy diet resulted in weight loss they’d have to stop. But Max never had infections, never needed a blood transfusion. Eventually, the team started to ask for details of what they were doing. Always, Audra says, they worked with the doctors as a team.

The shock had eased, but Max had struggles, including a new fear of the dark. Audra splurged on a $32 Twilight Turtle nightlight, which projected gentle green stars throughout his room. “He said, ‘Look, Mommy, those are healing stars.’ I was holding back tears. He took the turtle and put it up to the back of his head, where his big scar

was, and he said, ‘Look, Mommy, I’m healing.’ At that point, I said every child in the hospital needs one. I was overwhelmed by how beautiful it was. This was the first time I saw him do something for himself in his healing process. It was like his first moment of self-empowerment.” She wrote to the company, Cloud b, to inquire about purchasing the lights wholesale. Instead, the company donated them. They later had a garage sale to pay for shipping to families they had met in online chat rooms, and they dropped the lights off at CHOC. When she realized the company might want a receipt for its donation, she created the MaxLove Project. The MaxLove Project began with gifting nightlights, but soon it became a way for members of the childhood cancer world to connect and bond. They explained integrative care and whole foods nutrition. Audra, a former line chef, shared recipes and hosted cooking classes and has a cookbook coming out later this year. “In the first 10 years we were doing a lot of organic, research [and] development type of work, trying to figure out programs,” she says. “In our second 10 years, we’re getting to the place where we are focused on sustainability and scalability.” The organization’s app, she says, is filled with e-learning opportunities and courses developed by experts. It also features mental health support, nurse coaches, and dieticians. “For people in parts of the country who don’t have access to great care, a huge part of our mission is to bridge those gaps by providing this support,” she says. These days, she said, Max is 15 and doing well. He has been on an oral targeted inhibitor for the last 2.5 years ($40,000 a month, delivered by mail on ice). He’s discovered weightlifting, and the family’s move to Savannah, Georgia, last year has allowed him to leave behind his reputation as the “cancer kid who was once on Jimmy Kimmel Live!” “He’s had the chance to define himself,” Audra says. “He hasn’t introduced himself as a cancer survivor to any of his friends. He’s been able to, at 15, decide how he wants to do that and manage that. Cancer does not define his life.”

The move has allowed for the MaxLove Project to expand. Audra is opening an office in Georgia and replicating many of the Orange County events, like the recent MaxLove Project Farm Walk at Tanaka Farms. She is in California five times a year and annual events, like the Farm to Fork dinner scheduled for Sept. 17, will continue. Ultimately, she says, it’s all about offering support and assistance to families who are navigating the roughest seas imaginable. “There’s no guidebook, there’s no training,” she says. “You are in shock, and you are surviving trauma. It’s what all parents face. They need support. A huge part of our mission is to provide that.” For more information about MaxLove Project, please visit maxloveproject.org.