Meet Ethan
Letter from A Parent: Meet Ethan
Meet Ethan!
This little Avenger is dreaming BIG!
Letter from a dream parent:
We were ecstatic when we learned that we were expecting. For months we thought of what we would name our beloved boy. Finally, we decided on Ethan Leon. Ethan - just because, and Leon - because we loved Lions. We knew we were naming our boy after an animal symbolic for strength and courage. Little did we know though, how soon he would prove to live up to it.
On May 11th, 2018, our bubbly Ethan, at 10 months of age, was diagnosed with Acute Lymphoblastic Leukemia with MLL gene rearrangement. Our world broke. Upon discovery of his condition, he was immediately admitted to the children’s hospital. He began treatment right away and was in the operating room within the first 24 hours to have a central line placed. We remember so clearly, the shock, the confusion, the fear of the unknown. We could barely look at each other without shedding tears. Ethan on the other hand - even after being held down and poked, even after being in the operating room, even after being swarmed by a number of people he didn't know, was still his sweet, innocent, happy little self. Seeing that changed our perspective on life completely.
He spent the next year and a half in and out of the hospital. Different medications, consults, blood work, all sorts of testing, blood transfusions, lumbar punctures, and biopsies became ‘normal.’ Regardless of all this happening, it didn’t change how cheerful and active he was. He continued to develop, he learned how to walk, learned new words, he laughed all day and slept all through the night. He loved listening to music, and loved playing peek-a-boo.
He was not bothered by anything related to his illness. He never tugged on his NG tube, never pulled on his central line, he sat nice and still every time he was due for a dressing change, being leashed (by IV tubing) never stopped him from circling the hospital room, and he actually liked having his vitals taken. He relapsed in February of 2019 and endured radiation, more chemotherapy, and received a bone marrow transplant in June. He was a champ and danced, laughed, and played through everything.
He found a love for The Avengers, and to date is still incredibly obsessed with them. He is so obsessed with them, that even in his sleep he will yell out “AVENGERS ASSEMBLE!” or “HULK SMASH!” He knows the characters, and has a collection of action figures that he loves to share with others. When we were in the hospital, we always had to take them with us. He would show them to everyone who entered the room and often would battle heroes with the staff.
He was discharged from the hospital in late July and since then has been seeing his doctor at CancerCare for check-ups. Our days at home consist of never-ending play time. He likes lining up the Avengers toys, and either pretends to be the villain and knocks them over… or shoots them down with his nerf guns. He also loves to have endless dance parties and climbs everything he can raise his knees over!!
On February 10th this year, he will be back in the OR to finally have his central line removed. It is so relieving to know that he no longer needs it the way that he did in the last couple of years. With all his energy, it’ll be so nice to not have to worry about this line getting caught or pulled out!!
It has truly been a life-changing journey for all of us. We are grateful for our family and friends, all the hospital and clinic staff, volunteers, organizations, and even strangers for all the love, support (both emotionally and financially), and encouragement. Thank you to The Dream Factory for putting in so much work to make dreams come true! We are over the moon excited to hear that The Dream Factory will be teaming up with members of our community to send Ethan to meet his favorite heroes at Disney!