Before Audra Wilford's son Max was diagnosed with cancer at 4 years old, the Orange County, Calif., mother of two had a deep, sinking feeling. But she didn't want to be "that" mom.
After Max had woken up several mornings with headaches and the need to vomit, after doctors had told her that it was just a virus or a sinus infection, after she had checked WebMD only to find "signs of a brain tumor" written on the page, Wilford told herself, "I am not going to be that mom who brings in my WebMD [page] to my pediatrician. I am not that lady."
But when Max later fell from a low rung on his bunkbed ladder and couldn't get back up, she knew it was time for an MRI. She made her husband Justin call. "You need to tell them because I can't tell them as the mom, because I sound like a crazy mom," Wilford says she told her husband.
They had an MRI set up the next day.
The brain-cancer (mixed-grade glioma) diagnosis itself was crushing. But despite the shock, Wilford was determined to empower her son — and herself.
"I remember just being completely overwhelmed with emotion and sucking in every bit of my tears to turn around to this child to make sure he felt secure," she says.
That's when Wilford started talking to her son about battling the bad guys — the bad guys in his body that they could combat with medicine, with healthy food and with other great tools.
And with that, the MaxLove Project was born — in 2011, three months after Max was diagnosed. Wilford is the chief hope officer of the nonprofit organization, which teaches families how to make healthy choices about food, sleep, exercise in addition to traditional therapies. With Max's help, they've partnered with Cloud b to create a SuperMax the Turtle night light for children in hospitals. They've also joined with Jessica Alba and The Honest Company for the #HonestLovesMax campaign, which receives $1 from the company whenever the hashtag is shared over Facebook, Twitter and Instagram during the month of September.
Wilford was even named as a L'Oreal Paris 2014 Women of Worth honoree for her work (pictured right with Diane Keaton).
Wilford spoke with mom.me about creating the MaxLove Project with her son, who is now 8; how she fits that work in with having a day job and a young daughter, who is now 5; and what she would like other parents to know about battling a childhood disease.
How did you find the emotional strength to start the MaxLove Project so soon after your son's diagnosis?
That first night in the ICU, we started telling him a story about the bad guys, and I found quickly
that I needed that story as much as he did, if not more. And I started to live
by that story. I started to say, "OK, we're fighting the bad guys. This is how
we're fighting them. This is what we're doing. This is all the great food we're
going to use. These are the great resources we're going to use, this is how
we're going to do it." I needed to hang on to that. So I think creating that
empowering story from the very beginning helped.
I think starting the nonprofit organization once
we got home from the hospital and giving back and building a community was
really two things: It was coping through caring for me — I'm a doer. I have to
do something about this. I can't just sit here. I was taking Max to like 10
appointments a week, chemo every week. My colleagues were amazing, and they
donated their sick time and their vacation time to me so I could do that with
Max. So I wanted to pay it forward, really build a community and be a resource
to others because that's how I could cope. And then also, to help teach Max
about giving, because what started to happen was that every time someone came to
visit he would ask me where a present was. We were like, "uh-uh." You are not
going to start to develop this entitlement and these expectations.
To help us all cope with the devastating reality of childhood cancer, we had to do something empowering and hopeful and giving, making cancer give in some sense.
How did Max help out with the organization?
We always had the opinion that we wanted Max to
still really grow and develop through this, and he should still be challenged and
given the opportunity to give back and to learn, so part of it was also, "OK,
let's take these twilight turtles that we're sending to kids around the country
in hospitals, and you're going to help Mommy pack them and send them off so
that you can learn about giving." So maybe to help us all cope with the
devastating reality of childhood cancer, we had to do something empowering and
hopeful and giving, making cancer give in some sense.
What other ways has Max taken a leadership role in the organization?
If you were to ask him today, he would tell you
that he's the boss, that he's the founder. I love how he's taken it on. He's
made various videos and messages to send out to other kids to tell them how the
turtles work and why they're powerful. He has done a lot of things like drawing
pictures and including them in the different packages and things like that. He
also routinely likes to be a part of our meetings and planning. He likes to be
a part of the discussions. It's a way for him to process what he's been through
and process what other kids are going through.
though he's been really involved and we see this as a great learning experience
for us, we're sensitive to the fact that he didn't choose this path. He didn't
choose cancer, and he didn't choose our response, either, so he needs to have
choice. For every event that we involve him in — we took him to Super Saturday [to benefit ovarian cancer research], and we had a table with Cloud b — and it was awesome, but we said to Max, "You
will be Rainbow Looming with children, you are going to be representing the
nonprofit organization, you're going to talking to people about how SuperMax
the Turtle works, which they made inspired by him. It's going to be work. So
we're going to offer this to you as an opportunity to represent the nonprofit,
and you can be compensated for it, or you can turn it down. "Well, what's the
compensation going to be?" [he asks.] "Well, we'll get you ..." and we always negotiate a
little Lego or something like that, and what's beautiful is that he chooses. In no way are we stage parents, like "here's our brave cancer kid." But it really puts him in the position to understand what it's like to make the
choice to work with the organization and to be a part of extending the bigger
mission and being a mentor to other kids in some ways.
Very often the choice is, I've got McDonald's in my children's hospital, like in the lobby, or this really expensive food that I can't afford to experiment with. And we need to find a middle ground.
You have a day job. How do you fit that work into your nonprofit?
I am the director of student life at Saddleback
College [in Mission Viejo, Calif.], and I oversee our student leadership
development. I have been working in education over 15 years
now, and I was in the culinary field before that and then went back to school [and] got into education.
Interestingly enough, after Max was diagnosed,
my husband had always said to me, "You went to culinary school, you worked in
the business, you're in education. Some day this is all going to make sense."
Like why? And three days after Max was diagnosed, he looked at me and said, "This is why."
So I've been back at work for three years now
since his diagnosis. And I have an amazing boss who allows me to drop the kids
off at school in the morning and then come in, and then [have] flexibility throughout
the day. For the most part, I try to balance it
all and talk on the phone on the way in and talk on the phone on the way out
and I work pretty crazily nights and every weekend on MaxLove.
Tell us about "Fierce Foods" and how you integrate nutrition into the MaxLove program.
Very often the choice is, I've got McDonald's in
my children's hospital, like in the lobby, or this really expensive food that I
can't afford to experiment with. We need to find a middle ground. There are
other ways to do this, so that's why we started working with food and have been
so inspired by that part of our journey.
We took a really evidence-based approach and
really dug to find the very best
research when it comes to nutrition and cancer, and what we found
overwhelmingly speaking the evidence is clear that a whole-foods-based, lower
carbohydrate diet is essential, so that means really the foods we eat being as
close to the vine as possible and also really really really low in any type of
processed carbohydrates (so any kind of sugar).
We're crediting it with completely stabilizing
the growth of this inoperable brain cancer that he has to the point that our
hospital [Children's Hospital of Orange County] is the first in the nation to offer a front-line protocol for the
treatment of brain cancer utilizing diet. What we use is as many vegetables that we can get, as many
nutrient-rich fruits as we can get — so not really eating as many of the
high-sugar fruits; more of the nutrient-rich berries are fantastic. And then
high-quality proteins. We eat a lot
of nuts and seeds, but super-low on grains and no sugar.
You also have a daughter, Maesie, who's 5. How have you been able to explain this to her and fit her into all of this?
She was 16 months old when Max was diagnosed. I was actually filling out her initial early preschool/daycare
paperwork when I was at Max's diagnostic MRI. The one thing we first did is we
made the commitment to maintaining that for her. You would think, "Oh, she
should be at home with you guys going to all of Max's appointments," but in that
world all of that is just about Max. We maintained her enrollment because we
loved these teachers in the center that she was at, where she could have her
own world be about her.
She's very motivated and engaged and empowered.
She lets you know she's there. And part of that is the
environment she grew up in, especially when she was a bit younger. It's turned
into some amazing strengths. We've worked on giving her her own time. I take her on
dates, just her, to do special things together. And we discover things
together, so I try to really carve out alone time with her, and her dad does
I think a lot of the parenting conversations out there are disempowering to parents.
What would you like other parents who have kids with critical or chronic illnesses to know?
That there's hope, and we have more power than
we know usually to change the odds. That is to say that we are utilizing complementary
therapies, sleep, physical activity, mindfulness, and food to the extent that we
can. All of those things help change
the odds for our kids. And of course it's a different combination for every
single different person, for every different circumstance and different human
being, but these are empowering things that we can do at home to help our kids
through treatment. That would be the first thing to get through this.
second thing, related to the first, though, is don't make the perfect the enemy
of the good. I see more parents focus on what's perfect, and there's no
such thing, and that will only end up being incredibly stressful, but you have
to do what you can most of the time that you can, but it's not going to be an
always. Your kid may just have to have McDonald's that day, and that's not
going to kill them. But it's going to kill you thinking it's going to kill
them. Try to minimize that stress and anxiety that's tied up with perfection.
The one thing I would want to share with
typical parents coming from a parent who's been thrown into this totally
different world of critical illness with your child, is how resilient our kids
are, how powerful and resilient they are and how much we can learn from them,
and I think a lot of the parenting conversations out there are disempowering to
parents. It's, like, all of the things that we're scared of, that we're doing
Yes, they need our love and our guidance and
any number of things, but they're not just about to break. We can believe in
them, believe in their innate power and ability to grow.
What has Max told you he wants other kids to know about battling disease?
One of the things he said more recently than not
is "Be brave. You are strong, and eat broccoli." That's his tip on how to be
super, and I think a lot of the
typical kids, his classmates, have taken a lot of inspiration from that, from
him, which is really cool to see — them bringing their fierce foods to school
because they learned from Max.
How is Max doing now?
He's thriving! He's doing great. Our last MRI
showed a reduction in nodules and tumor locations. His [cancer] is all diffuse in
the brain stem and cerebellum, so we actually saw a reduction. He had radiation
about a year and a half ago, so that's pretty incredible that all he's been on
is his therapeutic diet, and we're seeing reduction in tumor size. He's
excelling in math, and he's reading. He looks
fantastic. He's trying to learn how to play tennis, and he loves "Minecraft."