My Story

Hi! I'm Ellie!

I'm 2yrs old and I have faced a lot in my little life. I am a joy to my family and I am a very brave girl. I am a Riley kid and I am extremely blessed to have a great team of doctors caring for me! Thank you for reading my story! Come back and visit often!

Ellie was diagnosed shortly after birth with a large perineal hemangioma, exstrophic bladder/bladder neck malformations, and tethered spinal cord (PELVIS Syndrome). In her first year of life she had three surgeries. Two were to correct her tethered spinal cord, and the third was to remove a portion of her bladder that was outside of her body (bladder exstrophy). The original plan was to have another surgery around the age of three to repair her bladder neck. But...........

Following routine pathology of the bladder tissue they removed, Ellie was diagnosed with  Rhabdomyosarcoma (Embryonal), a cancer of the connective tissue.  She completed a 46 week treatment plan of heavy chemotherapy, and in May of 2012 she had a radical cystectomy, removing her entire bladder and urethra and ALL of the cancer with it!  As of 3/25/13 Ellie is in remission! She will have a nice break before surgery in July to build her a continent urinary diversion.  Thank you for following her story! Your prayers and support mean a lot to us!

 Be strong and of good courage; do not be afraid, nor be dismayed,for the Lord your God is with you wherever you go. Joshua 1:9


Jamie Griffith posted a new journal entry, "One year off treatment!".

This week's scans are CLEAR! She has been off treatment and in remission for a year! Celebrating her two year cancer-versary tomorrow! Check out this spunk! Read more

Jamie Griffith added a new photo.

Ellen signed Helen (Ellie) Grace's Guestbook.

This is WONDERFUL!!!  God is so amazing.  Thank you for sharing this journey with us.  The updates reaffirm that prayers do have an impact.  Read more

Tom Elam signed Helen (Ellie) Grace's Guestbook.

That is all truly great news. God bless her skilled physicians, the insurance system that helps us all make extraordinary things possible, but most of all her parents, ... Read more

Jamie Griffith posted a new journal entry, "It's Been a While!".

Ellie is growing and is healthy and spunky! She had her most recent set of scans Jan 2 and they looked great. Completely stable! She saw her urologist this past week and ... Read more

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