The Childhood Cancer Blog

Ethan, Who Loved to Draw (Childhood Cancer Hero Spotlight)

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By: Shannon OConnor

Ethan’s parents were concerned. 

In March 2018, Ethan was suddenly unsteady on his feet. Lying on his side made him dizzy, and he started sleeping more than normal. His parents took him to see multiple specialists, but none could tell what was wrong. Daily vomiting turned into hourly vomiting, until finally an MRI revealed a brain tumor. 

The shock that Ethan’s family felt was indescribable, and their worries only grew as, that same week, Ethan was scheduled for surgery. Thankfully, surgeons were able to remove the tumor and Ethan began radiation treatment to rid his body of any remaining harmful cells. Then pathology revealed the tumor was anaplastic ependymoma

Ependymoma is the third most common kind of brain and spine tumor in children. The anaplastic subtype that Ethan was fighting causes cells to divide at more extreme and aggressive rates. A year after his intial diagnosis, Ethan relapsed in his spine. 

A second surgery couldn't remove the entire tumor, as it had intertwined itself too deeply. Ethan underwent 30 more rounds of radiation. His cancer was affecting his leg strength, so he was also visited by a physical therapist to learn to walk again. 

In November 2019, Ethan's routine MRI was completely clear of tumors. Ethan's parents were excited to see Ethan be a kid and do all his favorite things again, but a few months later, four new brain tumors were discovered. Surgery was no longer an option, so Ethan began 10 rounds of radiation, which made him stable. 

During this time, Ethan was finally able to enjoy all the things he loved most: building Lego sets, playing with his puppy, Milo, spending time with his family and drawing. Ethan loved to draw so much that he entered a design for a pair of cleats during the NFL’s annual My Cause My Cleats campaign. Ethan won the contest, and his unique Alex’s Lemonade Stand Foundation (ALSF) design was worn by Aaron Jones, running back of the Green Bay Packers, in a game to spread awareness of pediatric cancer and honor Ethan’s fight.

Then the end of August surprised Ethan's family with sad news. A follow-up MRI showed tumor growth in his spine and head. Before he knew it, Ethan was back at the hospital receiving twelve more rounds of radiation. His symptoms worsened, and he needed a wheelchair. Unfortunately, there were no other options Ethan’s family could turn to for help. Ethan was losing function and receiving comfort care. 

On December 20, 2020, Ethan passed away at 12 years old. 

Ethan’s smile, his joyful nature and his favorite things will always be remembered by his loving family. His siblings, Israel, Najma, Janoah, and Ludmila are all SuperSibs with ALSF, sharing their story with other siblings of kids with cancer and receiving special mailings to comfort and encourage them. His parents want to keep sharing their son’s story through ALSF so that others may understand the urgent need for better treatments and cures for kids with ependymoma and all cancers.  

ALSF proudly funds innovative and groundbreaking pediatric cancer research to accelerate the search for cures. With the help of supporters, creating a future free from childhood cancer is possible. 

Ethan has left a lasting mark in the hearts of many, and his story will continue to do so. Let more about our research grants