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Helen (Ellie) Grace’s 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

Latest Journal Update

Make A Wish!!!

I can't believe how long it's been since I've posted an update. Ellie is doing great! She is a ball of fun (and a ball of fire!). She's doing preschool one day a week, which she loves. Her last round of scans (June) was clear! Next round in November. The biggest news is our AMAZING trip to Disney with Make A Wish! We had so much fun, made so many memories, and even had tea with Mulan! We are hoping for a quiet few months before her next big surgery late spring/early summer. Now, A few wish photos!!

3 people hearted this



janice richards
Ellie is so beautiful!!! It is great to see and hear that she is continuing to grow and remain healthy. May God continue his mercy and blessings upon Ellie and you family!

Janice Richards
Ellen Dolinar
Thank you for the update and it is GOOD not to have to post them! We look forward to hearing about the November scan and I will continue my prayers for your ENTIRE family!
Rob Foote
What a answer to prayer. When I see Ellie today with her mop of hair, I just want to cry. The "whole" family has been very supportive throughout the fight and all deserved the vacation in Disney and some well deserved downtime.