November 9, 2010 – July 31, 2015
Ethan is our “special little middle boy”, who relished being both a little and a big brother. Ethan had a cheeky sense of humor, and with a mischievous grin, was always up to something–usually something messy like putting butter in his little brother William’s hair, or stealing the jar of Nutella from the counter and eating it with his hands. Ethan made fast friends and stole hearts everywhere he went. He loved his books, collecting stuffed animals, roll-poly bugs, puzzles, crafting and beads, the ocean, helping Papa make pancakes, snuggling with Mama, family pizza and movie nights, chocolate ice cream, and most of all, playing pirates and anything Disney.
Ethan was diagnosed with a low-grade pontine glioma in May 2014, at three and a half years old. He had a very raspy voice as a toddler and some difficulty articulating his speech, but nothing a little speech therapy couldn’t address. We were directed to see a pediatric ENT before proceeding with speech therapy to rule out any structural issues. Initial examination came back clear, but when the ENT performed a laryngoscopy, she found that Ethan’s right vocal cord, though perfectly formed and healthy, was paralyzed. It was then that a full MRI was ordered, and from that scan we learned Ethan had a diffuse pontine glioma. Since he was essentially asymptomatic and remained stable for many months post-diagnosis, the first medical team was hesitant to call Ethan’s tumor DIPG. That all changed on December 26, 2014, when Ethan’s condition declined rapidly due hydrocephalus caused by massive tumor growth. Ethan remained inpatient at Children’s Hospital Los Angeles while he received radiation and rehabilitative therapies. During that time he lost and regained his ability to breathe, swallow, speak, and walk. Ethan had a miraculous recovery during the spring of 2015 as he grew stronger every day with his brothers to motivate him. He even rode his bike and scooter again, and we all enjoyed a magical Make-A-Wish trip to Disneyland.
Our family was crushed when, in early June 2015, an MRI revealed tumor growth, and Ethan symptoms quickly progressed. It was then that the medical team considered Ethan’s tumor to be DIPG, and he was able to join a Phase I clinical trial of a new immunotherapy drug. Sadly, it was too late for our sweet boy. All told, Ethan endured three experimental chemotherapy protocols, six weeks of radiation, surgeries for a brainstem biopsy, port-o-catheter, EVD shunt, and a permanent feeding tube, and spent countless hours in speech, physical and occupational therapy.
After fourteen grueling months on his brain cancer journey, Ethan’s final decline was astonishingly and heartbreakingly rapid. Yet all the while, he was our loving, impish, sweet, brave boy. Ethan passed away in our arms at home the afternoon of July 30, 2015. He is missed beyond measure, especially by his parents, big brother Sam, and little brother Will; and by extended family and friends, and so many others who were touched by his bright eyes and infectious laughter.