Shy No More

Shy No More: SuperMax is thriving against the odds.

It would seem that parents who have created a nonprofit with their son’s name in the title, gone on the Jimmy Kimmel Show, and been recognized and funded by L’Oreal, The Honest Company, Cloud b and Ebay, wouldn’t be exactly shy. But the truth is, we have wanted to keep the focus of MaxLove Project on the tens of thousands of kids in treatment for cancer and the hundreds of thousands in survivorship. It’s really not about Max. It’s about changing supportive and preventive care for all childhood cancer patients and survivors. 

But after a day like yesterday—when we had a follow-up appointment with Max’s oncologist after an MRI scan last week—we can’t help but turn the spotlight on Max and say loudly that what’s happened with Max is not just “inspiring” but it’s an example. It shows what supportive and preventive care can achieve, especially when an entire community of doctors, nurses, friends and family push for it. Yesterday, we learned that—after four years that included a year and a half of chemotherapy, 30 rounds of radiation, 6 brain surgeries, a shunt placement, and a recurrence—Max’s nodules* are smaller than they’ve ever been. On top of that, Max is entering 3rd grade in a few days and working at grade level in Math, nearing grade-level in reading and writing, and enjoying a rich social life. This is not just a happy story; it’s completely defying the odds. 

Max has almost as many risk factors* as a kid can have: a tumor with high grade features, a tumor location in a very troublesome part of the brain (posterior fossa), multiple brain surgeries, long-term chemotherapy, brain radiation, shunt placement, and young age. The statistics are clear: the odds are that Max should not be able to run around on the playground with his friends; he should not be working at or near grade-level in school; he should be socially isolated and withdrawn; and if he has even survived this long, he should still be battling growing tumors.

Yet here we are. Four years after diagnosis and he’s a healthy, happy, socially engaged 3rd-grader. This is not lame parental one-upsmanship. It’s not about Max and it’s not about us as parents. It’s about what can happen when the medical system supports real comprehensive healthcare. What this means is that things that have made Max’s thriving possible are NOT genetic, NOT random good luck, NOT supernatural. They’re therapies and everyday actions (what researchers call supportive and preventive care) that can be a part of every child’s cancer treatment. 

Today, however, these therapies (such as acupuncture or therapeutic massage) and actions (such as dietary changes and sleep hygiene) are not part of the standard care that most kids battling cancer receive. The lucky few parents might be able to piece these together on their own. But most of us need support from doctors, nurses, friends, family, and community programs like MaxLove Project’s. The good news is that all the things that have helped Max are things that can be incorporated into every kid’s treatment protocol. They’re not things you either have or you don’t, like good genes or luck. 

So, what are these things that have helped Max to get to where he is today? They are all the things we focus on through MaxLove Project. To help keep it simple, we’ve distilled our healthy cancer survivorship plan into one little phrase: BE SUPER! Each letter stands for one major focus of comprehensive health and wellness:

  • Boost yourself with super thoughts (a positive, growth mindset)
  • Eat super fierce foods (high-nutrient, whole foods)
  • Sleep super peacefully (healthy sleep practices)
  • Unleash your super strength (increase physical activity)
  • Practice super mindfulness (mindful stress-management)
  • Enlist your super community (seek healthy social support)
  • Refresh your super surroundings (non-toxic living)

With the help of a lot of other people (researchers, doctors, friends, and family) we as parents worked on each of these points not only with Max but for ourselves. Eating fierce foods or getting more physical activity weren’t just important for him; they were important for the whole family. Because we had the chance to learn from dozens of researchers and doctors, we knew that all of these wellness points would improve our chances for a healthy, full life as much as it would his. We’ll give you a few brief examples:

“Boost yourself with super thoughts,” came from educational psychology research that shows that when we see ourselves as changeable and capable of improvement through practice we tend to do much better at learning new skills. But if we think of ourselves as having innate abilities (ones we’re born with) and that we’re either good or bad at certain things, then we tend to do much worse at acquiring new skills. So, it was important for us AND for Max to adopt a “growth mindset” early on and see that, despite a terrifying cancer diagnosis, we had the power to change and improve the odds through everyday practice at eating better, getting more activity, and working on getting good sleep.

“Enlist your super community,” was inspired by a huge body of research on the power of social support. Not only does social support—having people around us whom we can confide in and show us love and affection—directly improve health, but by surrounding ourselves with friends and family who practice (or at least want to practice) the same health behaviors, social support encourages us to keep it up. This inspired us to start our Fierce Foodies Online Support Group which has almost 450 childhood cancer parents and caregivers supporting each other everyday.

We could go on, but you can find out more about how we support families in these areas by going to maxloveproject.org. The most important point—what motivated this blog post in the first place—is that we are no longer shy about holding Max up as an example of what comprehensive supportive and preventive care can do. These daily health practices are not just luxuries or marginal add-ons; they’re central to giving our kids the best possible chance to thrive in the face of pretty grim odds.

* Nodules: Little spots of tumor.

* Risk Factors: Things that increase the probability of other disorders or diseases.