Aditi's Story
IT ALL STARTED WHEN…
On June 17, 2015, Aditi was diagnosed with a golf ball sized tumor in her brain. She was 4 years-old. She was supposed to start school the next day. That week we had just come back from an amazing holiday in Europe, got a new puppy, and I even went shopping for curtains for our new home. Things were falling into place and we were living our dream in Hyderabad, India.
On that day my husband, Rahul, and I took Aditi for a physical when one of our friends suggested that Aditi seemed weak on her right side. This was a minor weakness that we did not even notice. The doctor did a simple examination and in the 2 minutes that followed I knew something was wrong. We were asked to go directly to a diagnostic center to get an MRI.
It was 5:30 PM and the doctor had called ahead and requested the technicians to stay back to do the MRI. I can still hear the sound of Indian traffic as we drove towards the diagnostic center. On our way there I called my cousin, a well-known radiologist, and asked her to come to the diagnostic center. The technicians who knew her let her sit behind the monitors as Rahul and I held our screaming daughter on the MRI table. Anesthesia was something that never crossed my mind nor did the team mention it. After a few minutes as Aditi calmed down, I felt the urge to step out and go into the room with the monitors. I sat behind my cousin and that was the first time I saw this huge bright grey mass on the monitor at the center of her tiny brain. It was Pilocytic Astrocytoma on her left thalamus sitting on her brain stem. I went numb and cried in disbelief.
Next day we left for New Delhi in search of better treatments but, having lived in the US previously, we wondered if the American healthcare system was better suited for us. Two days later we left the life we had in India and moved back to the US. On July 13, 2015, Aditi had a debulking craniotomy at Boston Children's Hospital, one of the few hospitals worldwide at that time that had an Intraoperative MRI. It meant that the doctors could stop and look at her brain in an MRI machine during the surgery to get the most of the tumor. After the 9 hours debulking 90% of the tumor was removed. While Aditi recovered well from the surgery, she spent most of the next 6 months in rehab relearning how to sit, stand and walk.
On Jan 29, 2016 a follow-up MRI showed that her tumor started growing again -- fast. Not wanting to risk surgery again, our only option was chemotherapy. We chose Stanford’s Lucile Packard Children’s Hospital. We were told to expect stability not shrinkage. Aditi was scheduled to start the 14 month long chemo protocol on Feb 17, 2016.
Unable to come to terms with the fact that, as a parent, I had nothing in control, I started researching foods that would keep Aditi strong during chemo. I stumbled upon the Ketogenic Diet as a complementary therapy for brain cancer. I had never heard of this diet and, coming from a family of rice eaters, it was inconceivable! I started to reach out to nutritionists, researchers, cancer survivors, caregivers of patients who did not survive, and nonprofits from around the globe to understand what worked and what did not. The glaring fact that stood out was that most tumors feed on sugar/glucose and that carbs and protein also get converted to sugar. In this quest to find answers I was lucky to find Audra and Justin from MaxLove Project. For the first time in many months I felt heard, empowered, and in control. This community gave me access to real evidence-based research to use food as medicine. This information I then shared with family and doctors who were not yet on board.
In order to be in complete control of what I fed Aditi, I needed my family on board but they presented resistance worrying about:
The psychological and social impact of changing lifestyles for a kid that young
The vertical growth of a child on low carbohydrate diet
This was not the usual FDA approved, Doctor-backed treatment.
They simply did not believe that food can make that big of a difference
After long stressful conversations I finally convinced my family to try this diet for 3 months. The worst case scenario was that the diet would make a difference and the tumor would remain stable. The best case scenario was that the tumor would shrink. Either way it would do no harm, it seemed like a good risk to take. The day before her first chemo we went cold turkey and started Aditi on a Ketogenic Diet. Her next MRI showed 40% reduction in tumor size! All her subsequent MRIs showed consistent reduction in the tumor size. The MRI post the 14 months chemo protocol showed that the tumor has now shrunk by 98%. Doctors think what’s left behind is scar tissue from surgery. Fast forward to 2019, her last MRI says that there is no new enhancement or tumor growth! June 17, 2020 will be the 5th anniversary of her diagnosis and coincidentally her next MRI is scheduled for the same day. While scanxiety is real and is unbearable I find peace knowing for fact that her modified ketogenic lifestyle makes her stronger and her quality of life better
Cancer diagnosis is an inflection point and a mind numbing experience. As I hope to not hear those words again and wishfully think that no one else goes through it . Here are a few things that helped us gain control.
Why me and why us? While this might be the most normal way of reacting to such a diagnosis, this is a black hole. Reach out, lean in and get help. Help came to me from my MaxLove family.
Second opinions - Always get second opinions, this will make you sure about the diagnosis and treatment plans.
Research - spend time learning about the doctors, about the treatment plans and about what you can do to support such diagnosis .
Ketogenic Diet - It is more of a lifestyle change rather than a diet. If going cold turkey is hard then start slowly by removing sugars and processed food. Move the family towards a whole food diet before going keto. Switching to a Ketogenic Diet might seem overwhelming but it doesn't not have to be difficult. You will soon find recipes that will work for your family and once you figure out the alternatives it will not seem like a complete overhaul of the way you are used to eat. You will soon start seeing the benefits.
Community - Finding a community who understands your journey is very important. In fact reach out to people who had similar experiences, though some of their journeys might have been hard and depressing at times but the lessons of resilience that you will learn from them will be empowering.
Happy journey - find moments of joy and let yourself be happy. Because if you are not, your kids will not be happy. It is very hard but focussing on finer things in life makes this journey easier.
Exercise & sunlight - Be outside and get that sunlight and exercise. This makes a big difference both physically and emotionally.
As we celebrate the 5 year milestone post diagnosis, we are thankful to our family, friends and doctors that helped us navigate the emotional & medical journey. With humility, we also have come to realize that the world’s best hospital systems aren't necessarily always equipped on holistic treatment and that lifestyle changes such as a keto diet has a significant impact on prognosis. I am thankful to MLP in helping us in this journey to thrive.
Written by Aditi’s mom, Swetha Polamreddy