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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


We went in today for her post op appointment and tube teaching. The implanted catheter in her Monti-channel was removed and we will begin catheterizing it to empty the pouch. The SP drain was left in as a safety while we get the hang of cathing and make sure the pouch is working correctly. The next two weeks will be challenging, which we expected, because we need to expand the pouch to hold a greater volume. We will start with cathing every two hours during the day and draining freely at night. Then in three days we go to 3hrs during the day and every 4 hours at night, gradually increasing until we are every 4 hrs during the day and 8 at night, which will be her normal routine. We are looking forward to being drain free! I can't wait to buy her first pair of jeans :)
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4 Comentarios

janice richards
By Janice Richards
She is just so beautiful! Congratulations Ellie!
Ellen Dolinar
By Ellen Dolinar (big Ellie!)
I was wondering how Ellie was! This is great news. Another step in the journey. Thank you for the update.
Tom Elam
By Tom Elam
Wow, she has come a long way.
Rob Foote
By Grandpa
Another prayer from GOD answered!