Written By: Ethan's Parents, Nate & Sarah
Ethan Isaac Russell
April 16, 2016 - July 11, 2021
Ethan was an incredibly resilient boy, who pressed on through everything the world threw at him. From the month-long hospital stay for pneumonia that revealed his immune deficiency, to the year-and-a-half he spent in-and-out of the hospital for his three BMTs and related treatments, his courageous spirit never wavered.
Often we would walk the hallways at Children’s National in DC, and he would always wave and say a friendly “Hi!” to the doctors, nurses, and other medical staff (whether he knew them personally or not) going about their day. The rain we learned to dance in during Ethan’s journey was very heavy at times, from hearing his first and second BMTs in early 2020 had both failed, to learning that his late onset GvHD in January 2021 was the worst many of his doctors had ever seen, but Ethan persevered through it all – and with a joy not often found in these circumstances.
After his BMTs, he still had frequent clinic appointments, sometimes three or more times per week, and he would go without complaining (most of the time).
Whenever my wife and I are faced with difficulty now, we think back to everything Ethan went through with a good attitude, and these memories always help us keep things in perspective.
There were many times during Ethan’s early years that we called him “our faith building child” because of how active he was and how much he would get into. He would frequently do rascally things that would make us say “Yep, you’re a typical boy!” There were even a couple of times when he was a baby that we found him taste-testing pieces of mulch or leaves from our yard, which, as we later found out, was exactly what he absolutely had to avoid.
Ethan loved bears (his stuffed buddy “Bear Bear” being the most loved), “jewels” (anything that looked like a jewel) and other “treasure,” the colors orange and blue, ATVs, Monster Trucks, tractors, and pretty much anything else with wheels. The best days were ones we spent at his grandparents’ house, where Ethan got to enjoy many of those things with his PopPop, his Uncle Shaunie, and his Daddy.
Ethan’s birthday is only a few days from his PopPop’s, so our family has decided to continue celebrating their birthdays together. PopPop often called Ethan “the Man of Steel,” which is such an accurate description of our brave “Superman.”
Ethan loved Legos, and he had quite the collection, which now (along with his Nerf gun collection) is proudly displayed on a big shelf in his dad’s man cave. With my help, Ethan built a model rocket from a kit his PopPop gave him, and we finally got to launch it in March 2022 with Ethan watching from Heaven.
Times spent with his Mammaw were also some of his favorites, and what he most loved doing with her included going to Dollar General to buy a small toy motorcycle or ATV, getting lunch at Chick-fil-A, and enjoying rainbow ice at Carousel. On Ethan’s birthday this year, our family enjoyed some delicious frozen treats at Carousel in his honor, and to our surprise the flavors of the day were cotton candy (blue) and orange cream (orange) – Ethan’s two favorite flavors and colors. We know this prompted a smile from him down on us that day.
If we have learned anything from Ethan’s journey, it is that we were never intended to weather these storms alone.
Not only did God provide our immediate family to support us, but he also sent our church family, the Sweet Julia Grace Foundation, and many others in our community to stand in the gap and hold us up. The SJGF team has been alongside us pretty much from the beginning. From the big “Hallo-Thanks-Mas” celebration they threw for our family before Ethan’s BMTs began, to supporting us in numerous ways throughout, Sara and her team have truly been the hands and feet of Jesus to us. When Sara says “We’re with you for the long haul,” she definitely means it.
A note from SJGF~
To know Ethan was to fall in love with him. His hugs were heart-felt and his clever little jokes and sense of humor kept everyone in stitches. He not only lit up the room, he owned it. He loved his superheroes, but little did he know, he was the true superhero in everyone's life. This video is from Ethan's Hallo-Thanks-Mas party SJGF surprised him and his family with in the Fall of 2019, before he was admitted for his very long, but planned hospital stay for his bone marrow transplant. It was a day to celebrate Ethan and his family and to send them off to their long hospital stay with a full heart, gifts to entertain Ethan in the hospital and a whole lotta love. Ethan's party included fun for all the fall & winter holiday festivities; trick-or-treating, holiday games and crafts, a turkey dinner, and Santa Claus!
Sweet Ethan, you will be Forever Loved + Always Remembered.
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