Evan

In July 2019 Evan was diagnosed with an inoperable brain tumor called a diffuse intrinsic pontine glioma (DIPG). Prior to being diagnosed, Evan started to develop symptoms including loss of balance, neck pain, nausea, and some facial drooping. His symptoms came on very quickly, which is typical for DIPG. We brought Evan to the pediatrician on a Monday morning and they recommended that we go to the emergency room, in order to expedite a neurological consult and an MRI. Very late that Monday night, Evan had an MRI, which revealed a mass on his brainstem. The next morning we met with a neuro-oncologist, who explained that Evan had a type of tumor called DIPG. Because of the location of DIPG, it is inoperable and considered a terminal diagnosis. The median survival time is 9 months.  

To date, Evan has undergone brain biopsy surgery and 30 rounds of radiation under anesthesia. He was also on a very high dose of steroids last summer, which caused him to gain almost 20 pounds in a two-month period and caused his face to swell to a point that he was unrecognizable. In January 2020, Evan was started on a targeted chemo medication called Everolimus. 

Fortunately, radiation shrunk Evan's tumor by almost 50 percent and it has remained stable since September 2019. He is currently symptom free, other than some residual leg weakness. Evan currently undergoes MRIs every three months to monitor for changes. 

This past spring, I contacted our oncology team about a referral to a nutritionist or a dietician to discuss what would be the most appropriate diet for Evan; our oncology team did not have any recommendations. Around the same time, a friend suggested that I look into MaxLove Project for support. After joining MaxLove Project online, almost immediately one of the Mamma Mentors called me to talk about our story and what we were looking for in terms of support. During our conversation we discussed the possibilities of the Ketogenic diet, and I was connected with another local DIPG mom who just happened to be a Keto expert. 

Because of MaxLove Project, we have successfully transitioned Evan onto a Keto diet. The support that we have received from MaxLove Project has been life changing. Not only do they provide a place where parents can connect, they also provide individualized support on a regular basis. MaxLove Project has shifted our focus from not just surviving pediatric cancer, but to thriving with pediatric cancer. 

Evan is now 13 months post diagnosis and will be starting first grade in the fall. He is the sweetest little boy, has a heart of gold, and is filled with so much joy. Throughout all of this, he has hardly ever complained about anything and has been so incredibly strong. He loves Star Wars, Legos, superheroes, baseball, swimming, and playing with his older sister, Avery.  — Jess, Evan’s Momma