It all started when…
On July 25, 2016, life as we knew it completely stopped. For several months, our beautiful and spunky 19 month old son, Parker, had been demonstrating some fine motor loss in his right hand. Our neurologist suggested it could be something as simple as a pinched nerve, but recommended a MRI of the brain to rule out more serious issues. After Parker’s sedated MRI, we had been home only a matter of minutes before the phone call came in. Our doctor now knew the source of his fine motor loss: a large brain tumor near the hypothalamus.
Over the following two weeks we talked to numerous doctors, met with a talented neurosurgeon, had two additional MRIs, and ultimately ended up in surgery. Parker’s debulking craniotomy was a success and over 70% of the tumor (pilocytic astrocytoma Grade 1) was removed. He handled recovery well, with little to no issues from surgery, and we breathed a collective sigh of relief. Three months later, at his first post-op MRI we got the devastating news that the tumor had starting growing again. This time, due to Parker’s young age and the difficult tumor location, the only option we were given was chemotherapy. We agreed to start an 18-month protocol in December 2016, and our spirits were at an all-time low.
While we struggled to come to terms with the uncertainties of chemotherapy (there was only a 30% chance the tumor would shrink), I went into research hyperdrive. I had been aware of the paleo diet for many years and couldn’t shake the idea that sugar feeds cancer. In fact, when Parker was first diagnosed I panicked and told my family that he had to stop eating carbohydrates. I was dissuaded at the time and was told by numerous medical professionals, including family friends, that diet had absolutely no impact on Parker’s type of tumor. I look back on those three months post-op and wonder how it would have changed if I had listened to my gut, rather than giving in. But as with all journeys, the only way to look is forward.
In February 2017, after three months of chemotherapy, Parker’s tumor had shrunk minimally. He was eating a high carbohydrate diet at the time, like most two year olds, and while we were relieved that the chemo appeared to be working I revisited my initial instinct that diet was a factor. I had heard of the ketogenic diet and began reading as much as I could. By a stroke of pure luck, I stumbled across The MaxLove Project. Not only did I find a community of like-minded parents, but there was real, evidence-based research I could share with our oncologists. Two months later, I put Parker on a strict keto diet. His next MRI not only showed that the tumor was smaller, but that all the post-surgery edema was gone. At the most recent MRI (November 2017), we got the unbelievable news that the tumor was essentially gone. He will finish chemotherapy in April 2018 and we absolutely credit his amazing success with the combination of traditional therapy (chemo) and nutritional therapy (ketogenic diet).
There is so much that is out of your control when your child is diagnosed with cancer. I know firsthand that the fear can be paralyzing. But I’ve found the only way to combat the feeling of disempowerment is through research and subsequent action. Find your voice and learn to trust it. Advocate for your child. Have difficult conversations with your doctors. Get second and third opinions. Don’t let anyone tell you that diet doesn’t matter, because it absolutely does. Parker is a happy and thriving three-year-old, despite getting weekly chemotherapy infusions, due largely in part to the ketogenic diet. In truth, my only regret is that we didn’t start it sooner.
My best advice to newly diagnosed parents is to make the switch to a ketogenic diet a family affair. Get everyone involved in the kitchen and have some fun. Try new recipes, challenge everything you thought you knew about food, and strive for progress, not perfection. Wholeheartedly embrace the idea that food is medicine and feel the surge of energy that comes with doing something proactive and positive at home. But above all, be kind to yourself and know that you aren’t alone on this seemingly impossible journey.
Adrianna blogs at www.navigatingtheimpossible.com and on Instagram @keto4mykid, where she focuses caregiver support and the ketogenic diet for the whole family.
Stephenson Family: Charlie (dad), Adrianna (mom), Parker (3), Drew (5 mos)
Location: Dallas, TX
Hospital: Medical City Dallas