September 12, 2015 – September 20, 2022, forever 7
Diagnosed: August 5, 2021
Written by his mom, Rachel Paine
Eli was a kind, affectionate, wild, and smart as a whip boy. He loved singing, playing soccer, swimming in his pool, and being absolutely hilarious. Eli was a friend to everyone he met and had a smile that lit up a room and was somehow delightfully mischievous at the same time. He was inquisitive and creative. Eli loved superheroes, all things Disney and celebrating every holiday and event with the most enthusiasm and joy. Eli was sweet, loving and incredibly adorably honest. He loved his friends and family fiercely, especially his mom, dad (Chris) and his two sisters June and Lucy.
On August 5, 2021, a month to the day after our baby Lucy was born, we learned Eli had a large mass on his brain stem. Since then, our world has been turned upside down.
In the weeks before the mass was discovered, I noticed that Eli was tilting his head often and, even after being told to straighten it, it would just go back to that position. I knew that we needed to find out what was causing his head to tilt immediately. Eli had no other obvious symptoms, though through this process the ophthalmologist discovered poor vision.
Through persistence and a supportive Pediatrician, we got him to a neurologist who sent Eli for an MRI, and once the mass was discovered we were immediately sent to Nicklaus Children’s Hospital in Miami.
By August 16, Eli was being prepared for six weeks of radiation treatment in Miami. Eli and I stayed in Miami during radiation with my mom and Eli’s newborn baby sister Lucy. Eli’s big sister June, my husband Chris and my dad remained at home in West Palm Beach, with lots of visits back and forth on the weekends.
On September 12, Eli turned six and he was showered with celebrations including a Roblox birthday party, Chuck E Cheese, pajama birthday party, superhero celebration with the North Miami Police Department and ended the week with a party at the Hero Hangout!
All the while we were doing research, getting second and third opinions and talking with leading research doctors to put together the best treatment plan for our boy. Eli finished the initial 30 rounds of radiation on September 30, 2021.
Over the past year our journey has been long and difficult, but also full of prayers, fun and joy as we tried to keep life as magical and normal as possible. Eli was an absolute champion during MRI sessions that monitor the mass and was such a brave superhero through his treatments. Eli’s symptoms increased around the beginning of 2022 and since then Eli had dealt with many setbacks as we tried to treat all the symptoms of the tumor.
Most recently Eli had a long 42-day hospital stay. He was able to come home just in time to enjoy his 7th birthday. At that time, he couldn’t move, he couldn’t eat by mouth. He deserved so much more than that. It is not fair.
We lost Eli on Tuesday 9/20. He is now with Jesus healed and whole. We are shattered but will never stop until there is a cure.
We are blown away by the generosity of our village and donors like you. It is due to donations to foundations that are funding clinical trials that we even had options for treatment. But we need more options, a cure! Thank you for considering to donate in Eli’s name to find a cure. We love you all!
Please pray daily for a cure, and speak Eli’s name out loud and pray for his family now as he is free.