Bennett's Story

By Elizabeth Testa, Bennett’s Mom

There are days when life as you know it seems to just completely shatter into pieces, and March 16, 2018 was one of those days for my family.

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For most of his life, I had been noticing odd things about our sweet baby boy, Bennett. From a few episodes that seemed like seizures upon waking him up from naps to strange eye movements, my maternal instinct just told me that something was off. In the fall of 2017, he started to show symptoms of gross motor skill regression and developed a persistent tremor that our pediatrician’s office seemed convinced was a side effect of an asthma medication he was on. The tremor persisted for weeks though, and we were incredibly worried. Our doctor finally agreed to do a myriad of blood tests that all came back normal.

Our last step was an MRI, which we had around lunchtime on March 16. I knew something was wrong when they came back into the room to administer contrast - they hadn’t mentioned anything about contrast beforehand. My heart sank. After Bennett woke up, they pulled us into a room and told us they had found something on his MRI. Those words were life changing. My heart was totally shattered.

In the days to come, Bennett would be diagnosed with a diffuse brain tumor on his right thalamus, which is right in the center of the brain. His tumor is inoperable, meaning they won’t touch it surgically unless it’s a last resort - and he is so young that radiation could be very damaging to his growing brain.

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Oddly enough, one of my first coherent thoughts after getting the devastating news of his tumor was, “we have to change the way we eat.” I’ve always had an interest in nutrition, so I feel like our family was generally healthy before, but Bennett ate what I like to refer to as the “standard American toddler diet” - lots of sweetened applesauce pouches, sugary baby yogurts, plenty of animal shaped crackers and cookies and very few vegetables.

After some Googling and searching on social media, I was absolutely shocked to find that there was so little information on nutrition and holistic, mind-body practices for pediatric cancer patients. What I did find was really outdated and seemed to be sponsored by the sugary “nutritional drink” industry. Even his physicians (whom I love!) told us to let him eat whatever he wants. I wasn’t convinced. How could what you put into your body on a daily basis not affect a chronic health condition?

I read a few helpful books on anti-cancer foods, but it wasn’t until I found MaxLove Project that it all came together for me and I felt truly empowered to change our family’s way of eating and living to give Bennett the best shot at a healthy and happy “new normal” - thriving with a brain tumor.

We forged ahead with a plan, guided by the MaxLove philosophy and the awesome materials they sent us. The more we learned and implemented, the more we felt like we were taking back some of the power that you lose when being given such a devastating diagnosis.

The first thing we did is completely cut out all added sugar. Treats are now things like homemade popsicles made from fresh, organic vegetable and fruit juices or coconut milk and cocoa. We stay away from processed snacks and began buying real, whole food instead. We splurge for wild-caught salmon and grass-fed meat. If we do eat bread, we make sure it is full of whole grains and omega-3 rich seeds and doesn’t have added sugar.

We focus on eating lots of brightly colored vegetables, mixing in leafy greens whenever we can, and try to get lots of anti-cancer foods and spices into our meals. It hasn’t all been about food, either! We also found an amazing acupuncturist who loves working with children and has been wonderful with Bennett. We make sure that he stays on a healthy and rejuvenating sleep schedule. We choose joy and positivity in our day-to-day lives and try to always stay hopeful about the path our family is on.

So many incredible things have happened since last March 16. First of all, our family is so much happier and feels healthier than we have in a long time. I have been amazed at how well both of our children have adapted to a new way of living. Bennett is now 3 and eats cauliflower rice with turmeric, tart blackberries and zucchini noodles regularly. I have become incredibly skilled at finding ways to mix kale, spinach and other vegetables into his favorite foods!

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We also feel more present and grateful for each other than ever. When you know that there’s a possibility that you may have a much shorter amount of time with your child than you ever could have imagined - you try to make every moment count. We spend less time watching TV or mindlessly using our phones and more time playing together and having fun, new experiences. We avoid negativity and say “no” to outside commitments when we feel they aren’t a good fit.

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And since his diagnosis, one last amazing thing has happened that we are SO very grateful for - Bennett’s tumor has been completely stable! Because it hasn’t grown, we are able to just keep an eye on it with regular MRIs. If it does grow, we will do chemotherapy, but we are confident that we can get through treatments armed with the knowledge that we have gained over the last year.

If you find yourself faced with a cancer diagnosis for your own child, please know this: YOU are the very best advocate for them and while you can’t control so many things over the course of your journey, you can still find power and comfort in the things you can control.