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Helen (Ellie) Grace’s Story

Hi! I'm Ellie!

I'm 4yrs 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 has one big hurdle left, surgery to create a continent urinary diversion, scheduled for May 28, 2015. 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

Inpatient Bowel Prep

The plan is to admit Ellie wednesday morning for an inpatient bowel prep via NG tube. Ugh! It is the best plan, but miserable for her. We expect to admit around 9:30am. She'll prep through the night then go to surgery sometime thursday morning. 
1 person hearted this



Ellen Dolinar
Poor Ellie!!! Hopefully everyone made it through and Ellie sailed through surgery. Prayers for all.
Michelle Foley
By Michelle F
I'm so sorry. That is the worst - to know you have to submit to something so difficult for your child and will yourself to do so. I will pray God brings you as parents strength.
Linda Six
By Linda Six
We are praying for your precious Ellie. May Jesus' healing touch be upon her. Praying for you all as she goes through this procedure. May His peace be yours.
Missy Ortman
We are thinking and praying for Ellie and your family often! We hope that surgery goes well and recovery is as easy as it can be.