Ethan’s Story

Site created on February 21, 2023

Many of you have lived this journey with us for the last 16 years, but some invited to this page may not know Ethan's story.

Ethan (who just turned 21 on 2/13) has dealt with many challenges over the years. At 5, he had surgery to remove a very rare brain tumor (melanotic neuroectodermal tumor of infancy) followed by 6 weeks of radiation & 6 months of chemotherapy.

Over the last 16 years, he's had many complications from the surgery on his skull, radiation & chemotherapy. Some of those complications have caused physical issues & some manifested in learning disabilities. Although he has endured more than any child should, he still has a very kind heart & loves those close to him very much. He can be stubborn & crabby, but he has a unique sense of humor & cracks us up all the time.

In December, he had his yearly MRI & they saw a small lesion on his scan, but did not know if it was radiation changes or potentially something else. They wanted to have a follow-up MRI in March. Last week, Pauline & I noticed that Ethan's face was swollen & the swelling was affecting his smile. We shared the pictures with his oncologist & they quickly scheduled an MRI on 2/14. The next day, Pauline received a call from the oncologist letting us know there are now multiple lesions. Pauline & I met with his oncologist & neurologist on 2/16, and Pauline, Ethan & I reviewed the scans. His neurologist let us know that surgery is not an option because of the location of some of the lesions. We are currently at the stage where they need to identify these lesions & determine a potential treatment.

Please keep Ethan & our family in your thoughts & prayers as we struggle through this latest challenge.

Newest Update

Journal entry by Phil Joiner

Hi everyone.  We wanted to give an update on how we are doing.  To be honest, every day is very tough.  Ethan was a huge presence in our lives & his passing has left a giant void.  We continue to move on, but each day is very difficult.  Last weekend we enjoyed spending time with Cody to celebrate his 20th birthday in Kalamazoo.


I meant to send a message weeks ago, but we wanted to thank everyone who came out for the bowling event we had for Ethan's birthday.  It was short notice, but we had a large turnout & it was great seeing everyone, and we enjoyed spending time talking about Ethan.  During that event, the founder of the "Believe in Miracles Foundation" came & shared with us that they received enough donations from Ethan's funeral to grant a young man and his family a trip to Disney.  We want to thank everyone for the generous donations.  It means a lot to Pauline & me that through everyone's donations they were able to grant a wish to young man & his family.   I've added a picture showing the details about the wish that was granted in Ethan’s honor.


We want to invite anyone who is available to another event on June 8th for a 5k run or 1 mile walk fundraiser for the "Believe In Miracles Foundation".....Pauline, Ethan & I participated last year.  We are hoping to have a big turnout to represent Ethan for the event.  You can sign-up at the following link:

 https://www.believeinmiracles.org/news/9th-annual-jennathon-5k-run-1-mile-walk-in-troy/


We hope to see you on June 8th.

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